Transplant News

Ní Féidir Liom - No I Can't

2011-12-18T19:50:00.011Z

A mixed year is drawing to a close and I can't say I'm sorry - we've had a few battles, with many a triumph mind you, but we're battle weary all the same. 2011 started with a flood, progressed to blocked pipes and rounded off nicely in a dose of pneumonia.

Instead of new year's resolutions I've drawn up, what I like to call my Ní Féidir Liom list. As you may have guessed, I've always been more prone to rant than cant.

Here's a few of my more pressing I-just-can't-and-don't-even-think-of-asking-me rants on the last year:

The Ní Féidir Liom list.

No I can't understand why we as a nation owe money to someone we don't even know - did nobody think to check the signature on the cheque when we signed on the dotted line?

No I can't say I'm surprised that, a year after our last meeting, Enable Ireland still haven't answered our concerns about their breaches of Irish child protection policy. I can say that I'm much relieved that we no longer have to rely on their services for Boy Wonder but I do feel a kind of survivor's guilt for those who still do.

No I can't help being stunned by the kindness of strangers.

No I can't understand the hype surrounding sun-dried tomatoes.

No I can't help but be amazed by the wonderful support and energy we get from teachers and special needs assistants.

No I can't stop smiling every time I watch Boy Wonder singing Karaoke.

No I can't understand why a consultant gets snotty when you respectfully ask for a second medical opinion. I would love an insight on that one!

No I can't wait to get to London's Great Ormond Street Hospital to hear that second opinion.

No I still can't fit into a size 10 jeans - wise up love it's never going to happen!

No I can't thank people enough for their support.

No I can't but hope that 2012 brings us all more good fortune.

Thanks for the company and Happy New Year to you all.

Cheers,

Annb

Are We There Yet?

2011-09-27T13:19:00.006+01:00

It's been a busy few months since I last posted - we've been chasing our tails so much I don't quite know where to start. We're not there yet but we're darn close!

Well firstly, Jess got back from her camp at Barretstown with a nasty chest infection which she then passed on to Rory during our holiday in Connemara. That lingered with him for a while and then his gut started to act up, then it settled down again until suddenly all hell broke loose and we ended up back in Temple Street with pneumonia!

Needless to say the return to school has been disjointed and with that our whole household routine has been even more chaotic than usual. The other kidney and myself are now so wrecked that we are fantasizing about a week in hospital for ourselves just so we can catch up on sleep! We were so out of practice with the whole hospital thing - isn't crazy how quickly you forget? We morphed back into a pair of lightweight first-timers not able to plan even the most simple logistical task of organising after-school activities - I just got the last place in the swimming class by the skin of my teeth and I suspect the woman took pity on me as I was close to tears at that stage, or maybe she feared I might turn feral and make a lunge for her!

Today we're back on track, we've dried our eyes and blown our noses. Boy Wonder did his first full day at school yesterday and then promptly slept for three hours on the couch! We all got into to bed at 8pm and today I feel like I could run the world!

I've been working on a project all summer and it's finally ready for the world; all of you iPhone/iPad users out there check out my new app: http://sutromedia.com/apps/Ireland_Are_We_There_Yet

It's a travel guide to Ireland for parents travelling with kids: jam-packed with fun ideas of things to do and visit. It was a labour of love and written from heart but with a large chunk of experience of the survival tactics necessary for long journeys with cars full of the deafening chorus of 'Are we there yet?' emanating from the back seat. I hope you enjoy using it as much as I've enjoyed writing it.

Cheers,

Ann

Roots and Wings

2011-07-13T19:50:00.006+01:00

Yesterday Boy Wonder and I dropped Jess to Barretstown. It was a glorious day, the sun danced through the canopy of trees as we wound our way round the country lanes to Ballymore Eustace, Co. Kildare. The tingle of anticipation for a ten day sibling camp had infected the entire car, we were like a heard of deer on full alert, scanning each gap in the hedges for the first delicious view of the castle gates. I couldn't help noticing that this time she was even more excited at the prospect of going back. A mixture of age and experience perhaps, but I also think the magic of Barretstown had a role to play.

Their philosophy is simple: get kids together, give them loads of love and encouragement then throw in some amazing activities and sit back and watch them blossom. By taking these kids away from the stress of living with a sick brother or sister, this camp allows them to take risks, to take their feet off the brakes and just let loose.

I once read that a parent's job was to provide roots and wings for their child. Childhood illness has uprooted us and clipped our wings at times. We work at it, but it's not always easy. Barretstown allows me to sub-contract some of my parental responsibilities, at least in the short term, until I regain my nerve. These camps have reinstated the devil-may-care licence of her childhood.

Thank you Paul Newman, and your Barretstown Gang, I hope you can see her standing tall, unfurling those powerful wings to their full life-enhancing childhood span: un-clipped and uninhibited.

Cheers,

Ann

Organ Donor Awareness Week 2nd - 9th April 2011

2011-04-04T13:50:00.008+01:00

It's that time of year again when the donor community fight to bring the issue of organ donation to the top of the busy news and media agenda. You may even have read some very moving personal stories in the Sunday newspapers yesterday. It's an ongoing battle, which although meets with very little resistance, still feels like rolling that boulder up that hill. 2010 was one of the worst years on record for organ donation: there were only 58 deceased organ donors, a 35% drop on 2009 donor levels. 1989 was the first time Ireland broke the 100 kidney transplants in a single year, which considering there were only 178 people on dialysis back then, must have had a huge impact lives of those on the transplant list. Over twenty years later in 2010, there were 1,780 people on dialysis; the 58 deceased organ donations falls far short of this new demand.

There are many reasons for this anomaly, one very obvious cause is the laudable decrease in deaths due to road traffic accidents. Other causes are less tangible - but a recent survey of the rate of donations per hospital around the country seems to indicate a lack of trained staff to broach the subject with grieving next of kin. The new programme for government includes a commitment to the introduction of an opt-out system of organ donation. This system operates on the presumption of consent: everyone is an organ donor unless they have expressly opted out. A controversial system, which is not universally welcomed by the donor community. Many feel the generosity involved in giving permission for organ donation is too enormous for others to merely presume it will be granted. Mark Murphy of the Irish Kidney Association has favoured a required request system such as exists in the US: medical staff are required by law to request permission for organ donation where appropriate. Under this system, the family can still refuse if they believe it was not the express wish of their loved one. Whatever the outcome, the debate is to be welcomed; 1,780 of our friends, family and neighbours have had their lives placed on hold due to chronic kidney failure, we owe it to them to radically increase our incidence of organ donation.

There are two new links on this blog which will give you an insight into life on dialysis and the light donation provides in the vast black hole left by the death of a loved one.

In the meantime you have the power to do something that could save a life: text the word donor to 50050 to receive your donor card or for those of you with posh mobile phones there is an e card available for both android and iPhone through the App Store.

Cheers,

Ann

World Kidney Day

2011-03-10T09:28:00.010Z

Since it is World Kidney Day today and the issue of organ donation often seems so abstract, I thought I would try to explain the difference that lump of human tissue has made in our lives.

But then I didn't know where to begin, the changes are so radical, yet so utterly normal and all encompassing.

At the most basic level, there was the first golden urine we saw way back in November 2007, shining droplets, each more magical then the last, starting with a steady drip, then swelling to a thirsty flow, like the first shower in the wake of a four-year drought. Even now, over three years later, I still marvel each morning when I'm greeted by half a litre of this extraordinary elixir shining through the plastic shell of his overnight urine-drain bag.

The arrival of this fabulous, glorious liquid means that we no longer rouse our boy at 4.30 am, every Monday, Wednesday and Friday to begin the long haul to Dublin for dialysis. His ability to produce this precious juice means we have thrown away a plethora of anti-hypertension medication, along with a well-used Sphyg and Doppler machine. This much-beloved amber nectar has given him the strength to become a regular schoolboy, to fight with his big sister, to enjoy birthday parties, to get into trouble, to laugh 'till overwhelmed by hiccups; quite simply, it has allowed him to reach the ripe old age of seven and a half.

For Donor Card free text 50050 and please make your wishes known to your loved ones.

Cheers,

Ann

Personal and Domestic Plumbing Perturbations

2011-02-11T19:34:00.008Z

As a month it's been memorable, not in a misty-eyed, rose-tinted glasses mode though; more like a veritable mensis horriblus. It started with the Stephen's-Day thaw, one of those once-in-a-lifetime, extraordinary weather events that saw the temperature soar from a bracing minus seven to a balmy plus eight in the space of 24 hours! Our house being of the Baby Boom generation with all the attendant physical figaries of third age, was perhaps built to withstand such events while in its first flush of youth but not now in its sixties. As with all cantankerous 'auld wans, when placed under such extreme environmental pressure; our house burst a pipe. The water broke through the ceiling just left of Boy Wonder's bed and flowed unimpeded through the house until it had laid waste to three ceilings, one floor, quite a few pieces of furniture and a brand-new space ship which had recently landed courtesy of a very kind gentleman delivering goods from somewhere north of Greenland.

We were homeless but unharmed and in possession of a fully paid-up home insurance policy, it could have been a lot worse we reasoned calmly. Of course it could, I know it could, but six weeks in and still no sign of a moving-home date I have to admit to having a meltdown and to believing in my own self-indulgent, snot-fest that it couldn't possibly, ever be worse than this! I hadn't realised how much my home serves to anchor me in the chaos of the open water of life with a kid with a secondhand kidney. Well at least now I know (note to self: avoid repeat of homelessness at all costs).

As luck would have it, Rory's own plumbing, although considerably younger than that of our humble home, had its own foibles. I believe the technical term for his condition was a 'kink in the pipe'. Probably due to the meteoric rate at which he is growing, this 'kink' needed a lot of investigation and a whole heap of monitoring. The added complication of spending at least one day a week in a hospital on the other side of the country does little to aid the affliction of temporary homelessness.

In the midst of the maelstrom created by staunching the flow in some pipes, while trying to increase the output of others, the HSE saw fit to cancel Boy Wonder's medical card. A mere slip of the pen almost put paid the very costly supply of anti-rejection drugs. As is usual with all things HSE-esque, it took a small non-renewable forest of paperwork, coupled with the intersession of saints, scholars and, I dare say, a near-schizophrenic mother to get it back.

I have greeted the recent arrival of spring with a sense of exhaustion so pervasive that I have been unable to think never mind blog. I'm hoping the stretch in the evenings will loosen the logjam in my brain and allow some light to flow again.

Cheers,

Ann

Merry Christmas

2010-12-25T10:13:00.003Z

Our house has been filled with the sounds of rollerblading- astronauts preparing for hazardous missions in far off galaxies since early morning. The front room is a mine field of discarded wrapping paper, un-read instructions and assorted decorative debris. As I look out on the snow and ice I am again struck by our immense good fortune: we are not forced out in this weather, we don't have to make to the hospital tomorrow for dialysis. Please spare a thought for those who still do and perhaps in doing so, you might consider an organ donor card as one of your new year's resolutions. We are settling in for our third consecutive hospital-free Christmas and for that I am eternally grateful.

Merry Christmas

Cheers,

Annb

Three Years Today

2010-11-13T20:24:00.004Z

I figured today I'd let the pictures do the talking. Sorry about the technical glitches, I think an ad even snuck in there somewhere - it's been an emotional day!

Cheers,

Ann

A Winter Tonic.

2010-11-02T17:37:00.008Z

It was one of those days, I had foolishly turned on the radio only to be assaulted by a torrent of fiscal doom and gloom. The rain was of the biblical variety and the weak spot in the kitchen had sprung a leak, spilling an expanding pool of rainwater across the floor towards the fridge. The mop was nowhere to be found and the anaemic light from the blinking bulb in the hall was vainly attempting to augment the darkness of this November noon; scuppering any hopes of a mop search and rescue mission.

I could feel the clouds lowering and then all of sudden, they were lifted by that reassuring ping of my mobile phone announcing an incoming message. Someone out there was thinking of me. It was a picture message from school. In a single flash of communication technology, this one simple image immunized me against this year's two deadly doses: the weather and the economy. I hope it works for you!

Cheers,

Ann

Subordinated Debt

2010-10-02T14:17:00.006+01:00

It's the phrase on the lips of every eejit who's trying to look clever. Personally I think the term was invented in a board room somewhere south of Hades, to be used as a tool to bludgeon the general population into a pulp. I have to admit it's pretty effective, since only fifteen hundred people turned up to protest in Dublin last week at the extent of the country's economic hangover.

Being a simpleton with a less than competent grasp on the state on my own overdraft never mind the national debt, I resorted to my old friend Google. So here goes a bluffer's guide to Subordinated Debt :

In finance, subordinated debt (also known as subordinated loan, subordinated bond, subordinated debenture or junior debt) is debt which ranks after other debts should a company fall into receivership or be closed.
en.wikipedia.org/wiki/Subordinated_debt
Term covering hybrid core capital and subordinated loan capital. Only losses exceeding the shareholders' equity are covered.
www.nationalirishbank.ie/en-ie/About-National-Irish-Bank/Bank-in-brief/the-crisis/Pages/Dictionary.aspx
Debt that carries a lower-priority claim on issuer's income or assets than that of other (senior) debt.
www.freddiemac.com/smm/s_z.htm

There were many more - Google it for yourself, it makes for interesting reading. It occurred to me that children's health services will become the subordinated debt of our solution to the mess in which we find ourselves.

So if I understand this correctly, (which lets face it, in my case is a big 'if') the economic unit on which our future depends is currently being subordinated in favour of the senior units who screwed the whole thing up in the first place.

Permit me an analogy here: a child like our Boy Wonder requires expensive medical treatment to keep him alive, this treatment is attractive to senior medical units because it shows the tangible result of extending the life of that child thus reducing the national child mortality rate, which reflects well internationally on the country as a whole. The effort vs reward equation stacks up well in the short term and saving his life is rightly seen as a senior debt.

Once the danger has passed, the child then slides down to become the subordinated debt of the local primary care authority. In the eyes of the primary care bosses, the child will neither exert enough pressure nor bring sufficient reward to warrant being considered as a senior debt. As a subordinated debt, there is no incentive to provide specialist intervention to allow the child to reach their developmental targets.

When the child ends up in a classroom requiring a special needs assistant or specialist equipment, they can migrate to being a senior debt liability again but the debt has now passed to the education department. The education mandarins will in turn strive to reduce their level of debt on this child by redefining the terms of their liability. Simply put, they will change the terms of the child's entitlement. This change in the terms of entitlement will result in creative reporting from the 'ologists in primary care to meet these new terms and ensure they can off-load the child from their debt portfolio. And so the debt shifts back and forth changing status with each department.

What we all know about debt is that we tend to prioritize our repayments in favour of those yielding the biggest baseball bats should we refuse to pay. Currently the ones holding those lumps of lumber, are unidentified bond holders; nameless, faceless entities beating our children out of the way while they charge to the top of the queue.

This is what comes of living in an economy instead of a society.

Cheers,

Ann

Losing the Run of Ourselves

2010-09-08T20:20:00.009+01:00

Obviously encouraged by the recent bouncy castle success, we threw caution to the wind and booked a short family holiday, on an island no less. Our now über-normal nuclear family casually committed to ferry timetables like it was second nature to us. Admittedly, the planning did start back in the late spring as we haven't quite arrived at the 'spur-of-the-moment-family-break' stage yet but we're damn close! Jess decided that it would be 'good for us' - her words exactly- to have a holiday where we could all cycle together somewhere safe. After much consideration, an island without any sheer cliff faces was considered the best option. Inishbofin - just off the Connemara coast was a no-brainer: close to home, few cars, beautiful beaches and best of all a house with an enclosed garden to rent - what's not to like?

That, of course was the easy part, the difficulty was getting a date to fit with Rory's ever increasingly frequent 'olgist's appointments and the other kidney's hectic work schedule. This short break was subject to some of the most elastic scheduling ever witnessed by any aspiring tourist! The elastic finally snapped when the school bell rang again in September, so we opted for the first weekend after the dreaded school return, figuring it might lighten the back-to-school blues for our less-than-enthusiastic pupils.

And so off we went, I stressed as usual over the packing, with copious lists and then some lists about lists and more just-in-case supplies than your average UN African peace mission. When we arrived at the quayside I was marginally concerned that our luggage may sink the rather tiny looking ferry. I say tiny only because the patch of Atlantic that stretched out between the pier and the island looked so vast and I, not being blessed with a pair of sea legs, was not relishing the short but inevitably bumpy crossing. Boy wonder, on the other hand was positively buoyant at the prospect of having his guts rattled by the waves! While the local insect life feasted on my face (judging by the trail of bites still visible across my cheeks, I was clearly a rare delicacy in those parts) we loaded on to the ferry set sail for our own little treasure island.

What followed were two days of sheer bliss. The sight of Boy Wonder's be-helmeted head thrown back, arms out-stretched in joy as he sailed down the fuchsia-filled lanes on the back of his father's bike will keep me warm right through the cold winter ahead. Jess got her wish and we cycled every navigable lane on the island - and as it's been a while since I've been on a bike, I now have the John Wayne walk to prove it!

It was a fitting salute to the brave Tour de Picnic crew, cousin Dave and Auntie Mags, who cycled the 90km from Dublin to Stradbally in aid of Temple St. Hospital that same weekend. Thanks to all of you who supported their fundraising so generously, because of your help, the event raised almost a half a million euro for the hospital's neurology department.

You could say it was a great weekend all round.

Cheers,

Ann

The Future is Bouncy

2010-08-24T21:25:00.005+01:00

Ever since his birth I have avoided looking forward, choosing instead to be grateful for each 'present' with Boy Wonder. The future was not our country, we had no business there. Today, on the occasion of Boy Wonder's seventh birthday we allowed ourselves the indulgence of a day-trip to the future. We fearlessly planned a party but not just any come-over-we're-having cake-event, this was a full-blown, bouncy-castle bonanza.

It was delivered shortly after noon, he had to stand on a chair to watch through the kitchen window as it inflated before his incredulous eyes. His sister swelled with pride, hardly daring to believe that this festive event was destined, at last, for her back garden. The call came from the other kidney minutes later, 'the guy says he needs two kids to test this yoke'. They were like bullets out of a gun, whizzing out the back door. The bouncing began to shrieks of laughter and whoops of delight; the facility being thoroughly tested and declared party-ready before the cousins arrived. The afternoon was dry and we settled around a garden table, which creaked under the weight of palette-tickling party food. Pots of tea punctuated the ease of the gathering, all relishing the now while acknowledging but not dwelling on the past.

This is, dare I say it, yet another milestone; his birthday has magically morphed from difficult memory to joyous celebration. He has asserted his seven-year-old self and demanded his own gifts, written his own guest list and dictated his own day. I had never let myself travel as far as to even imagine this day. To see him seemlessly, breathlessly and brazenly snatch it, has been one of the greatest thrills of my life. Long may you bounce my boy, long may you laze in the love of all around you, long may you and your sister make us feel like we have glimpsed into the future and been granted the world.

Cheers,

Ann

Summer Fun

2010-07-30T12:02:00.010+01:00

I couldn't think of an appropriate way of describing the joy of summer holidays spent without the restriction of travelling to Dublin three days a week for dialysis, so I thought I'd just show you instead.

Cheers,

Ann

Guest Post

2010-07-07T17:07:00.009+01:00

A post with a difference today - My nephew is doing a charity cycle - one of the best ideas for a fundraiser I've heard in years it's the Tour de Picnic - a cycle from Dublin to the Electric Picnic Festival in aid of Temple St. He has a target of 500 euro to reach by late August so he's putting out the call. I appreciate times are tough so no pressure here folks but if you do have a few spare quid (rare these days I know) and you would like to see a good return on your investment, this might be just the thing for you! Or better still if you fancy fighting the summer flab and getting into training yourself, this could be a great day out and you get to attend the festival for free afterwards. Sounds like a win / win scenario to me!

Hey Guys,

I'm doing a fundraiser cycle event for charity and I have created a fundraising page on mycharity.ie. The Temple Street Children’s University Hospital is a very worthy cause and I would very much appreciate your support in helping me to raise funds for this charity.

All proceeds go directly towards purchasing vital life-saving equipment for the Hospital, in particular the Neurosurgery Department. I became very aware of the special work this hospital does just a few years ago when my young cousin was born without both kidneys. Through the work of the staff he was kept alive until he was able to undergo a kidney transplant operation. By donating to this charity you are contributing to the vital work needed to assist children who are suffering from life-threatening brain and spinal conditions.

Click on this link and see what I am doing and when I am doing it. You can sponsor me by credit or debit card through the mycharity.ie webpage that I have created. Don't worry, the site is very secure and your credit card information is very safe. Please give as generously as you can.

Thanks in advance for your support,

Regards, David

Cheers,

Ann

This Place is Crack-a-Lackin!

2010-06-19T10:20:00.004+01:00

Dear Galway Dive Club,

I took Boy Wonder for his routine post transplant check up in the Renal Clinic in Temple St. last Thursday. Although word had reached us that Olive, the play specialist, had transformed the clinic waiting area into a jungle, nothing could have prepared us for the gasp of delight from our little man as he rounded the corner. His eyes lit up and he stood rooted to the spot, momentarily speechless, until he turned slowly and announced to the assembled staff and kids that this place is crack-a-lackin'! High praise indeed from a very discerning young man who, in his short 6 years has seen the inside of most of the Paediatric facilities on this island, and some other islands too!

This magical transformation was entirely financed by the sale of your beautiful calendars. I was incredibly moved by the fact that a group of people who had probably never even been to Temple St., contributed their time and energy into raising money to enhance the lives of kids like our Boy Wonder. For kids with renal disease, frequent hospital visits are an all-too necessary part of their childhood. For parents, having a joyous and welcoming hospital environment lifts our spirits at a time when they in danger of being quenched.

Please know that the money you raised has already made a very important difference in the lives of the kids and staff of the hospital and will continue to do so for many years to come. Take pride in the fact that your efforts will be the ingredient that will help a scared child overcome the worry of an impending blood test or provide a frazzled parent with a welcome distraction from the drudgery of dialysis.

Thank you for thinking of us, our tough journey has been eased by your concern.

Wishing you good luck and awesome diving!

Cheers,

Ann

Late and Lame

2010-05-29T13:53:00.004+01:00

The HSE have now confirmed the shocking total of 37 children who have died while in the care of the state, 18 of whom died of 'unnatural causes'. We wonder how this can happen and why nobody has been talking about it. Let me give you a little insight into why these appalling statistics do not surprise me.

As you all are sick of hearing - in July 2008 boy wonder was referred to a speech therapist employed by Enable Ireland; a HSE funded organisation charged with the care of children with a physical disability. In the words of the Attorney General of the State of California, this particular therapist was ' a threat to public safety'. The Children First officer charged with the implementation of child protection guidelines within the HSE West issued a report in September 2008 stating that by referring my child to this therapist, Enable Ireland were in breach of these guidelines. It is almost two years since that report - and almost a year since I had my son's services transferred to another service provider. In all that time I had no contact from Enable Ireland, until a letter arrived last week from the medical director who is a consultant paediatrician.

This is what it said:

I would be very pleased to discuss Rory with you at a time that is convenient.

I know that you had a number of concerns about Rory and the Enable Ireland services and would wish to address these with you.

Best Wishes etc etc.

Two years after such a serious incident I get this kind of nonsensical response. And the icing on the cake: both my name and address were written incorrectly.

Now tell me, would you bother meeting a muppet like this?

Cheers,

Ann

More Munchies Mr. Mozart

2010-05-19T17:06:00.010+01:00

Rory's been on a steady diet of Mozart and solid food lately. Yes, your eyes do not deceive you, I said solid food, well incredibly mushy, puréed solid food, but food to be ingested by the mouth, so technically it's solid OK? Are these connected I hear you ask, who knows? They have certainly coincided and we have noticed Mr. Mozart working more than mere musical magic with boy wonder in the past so draw your own conclusions.

So here's the deal, boy wonder recently completed a three-week intensive listening therapy programme with an amazing speech therapist who worked with him some years ago when he was known as tiny tot wonder. At that stage he was still sans kidney and hadn't even learned to walk, but he was covering some ground at high speed on his be-nappied rear end - leaving miles of high gloss shining floors in his wake. We even considered hiring him out to contract cleaning companies such were the lean-mean-polishing-machine like characteristics of his developmentally-delayed derrière.

But I digress, he was well shy of the 10kg body weight required to even be considered for a transplant and since he had no urine output his intake was severely restricted to 450ml per day. A mere 'wee dram' in drinking terms. We were desperate to get him to eat so we could beef him up with some solid calories. A course of Therapeutic Listening was prescribed - it sounded non-invasive and pleasant and well, we were running out of options so we gave it a try. The effects were astonishing; within weeks he had been weened off his anti-hypertension medication and was as mellow as a Californian surf dude on a sunny day.

We had tried to do the intensive LIFT programme a few times since the transplant but there was always some impediment, a tummy bug, a hospital admission or just general meltdown.So, by a series of serendipitous encounters, all far too complicated to go into, we found ourselves at the Listening Therapy Centre in Galway in mid-April.It was one of those extraordinary cases of the very right place at the very right time. Rory had two hours of Mozart five days a week for three weeks, during which time, with the supervision of our Temple St dietitian we cut back on his liquid calories.

At this time he was eating a Petit Filou yogurt daily at school but still refusing point-blank to open his mouth for food at home. The listening therapist felt it would be imperative to widen the range of locations in which he agreed to eat, home being the last mountain to climb. Within two days, he was eating during his therapy sessions and by the end of the first week aided by bare-faced bribery and without too much protest he tasted food at home.

We have now arrived at the stage where he is eating a full jar of baby food at school in the morning and a range of puréed fruit and veg in the evenings at home. The bribery has radically diminished and the protests have all but disappeared. Even as I type I have to look twice at that last sentence, pinch myself and swear I'm not making this up. Suddenly our horizons have been utterly transformed, the tantalizing thoughts of family mealtimes, even a restaurant outing are flagrantly stalking my day dreams without fear of ridicule.

I think we can officially claim this as progress!

Cheers,

Ann

Tursday 20th update:

This must be our week - our nurses have apparently been reinstated. We can't be sure because of course we haven't been told, but it appears the nurses have been told to turn up - when and for how long? Well we'll just have to wait and see won't we. Obviously we will be the last to know, as such information is highly sensitive and probably top secret... so, if anyone asks, you didn't hear it from me.

Shush!

Words from the Western Front

2010-04-20T17:15:00.025+01:00

I've just watched the BBC 2 programme on Great Ormond Street Children's Hostpital Renal Unit. I had forgotten how hard it was when Boy Wonder was a tiny baby. I had blocked out all those life and death moments, the meetings in those tiny rooms with medical teams, the surgeries, the ventilation. I had almost forgotten, shame on me, that I have the extraordinary good fortune to share my life with a miracle.

I was so caught up in a mind-numbing stateless stand-off with the hard-hearted entity with the wonderfully ironic moniker: 'The HSE Primary Continuing and Community Care Unit'. They nearly took my sense of wonder away and more fool me, I nearly let them.

Cheers,

Ann

To Win Just Once

2010-04-15T20:10:00.005+01:00

It's been a rough week. Community Don't Care are battering us yet again. I'm tired. I'm sleep deprived. I'm fed up and really not very user friendly at the moment. My lifeline has been cut. One night a week we had a nurse look after Rory. It meant a full night's sleep. A glass of wine. A life. Three weeks ago, the nurses stopped coming, just like that. No word. No communication, nothing. The HSE informed the nurses their services were no longer needed. Nobody called us. Nobody asked if Rory's situation had changed. Nothing.

I know I need to get my fighting boots on but my soul is tired. I'm battle worn and low on victories. I'm out of words so I'll let this song say it, while I re-charge my flat battery and dust off my flak jacket.

Cheers,

Ann

Organ Donor Awareness Week 27 March - 3 April 2010

2010-03-27T10:45:00.010Z

Last year 90 families, who were forced to say a final farewell to their loved ones, made the ultimate act of extraordinary compassion by agreeing to organ donation. These 90 grieving families' decisions saved the lives of 243 people in 2009.

Spread around the country there are now 172 people with new kidneys, who no longer have their lives on hold because of their dependence on dialysis. They are currently busy planning holidays, returning to work or study, maybe even running after grandchildren: activities which would have been unthinkable for them in 2008. There are a further 64 people who received the gift of a new liver; 11 were given new hearts and 5 more are breathing easily for the first time with new lungs; 8 others have thrown away their insulin supplies because of the magical arrival of a new pancreas.

Our friends in the amazing transplant team Beaumont hospital, with a level of productivity possibly unique in the Irish healthcare system, have raised their number of kidney transplants from 146 in 2008 to a new annual record of 176 in 2009. The HSE in its wisdom, has penalised this success by not increasing the budget to meet consequent strain on existing resources. As a result, the team were forced to export two donated kidneys and a pancreas to the UK transplant system because there were no available beds for the prospective recipients in Beaumont.

To quote the late Frank Deasy: Organ donation contains a possibility almost unique in modern life. We, the general public, can make a difference. It's not like the economy, the climate or Afghanistan. ...Your consent is the missing element in the equation of saving lives. That's pretty extraordinary.

Just in case you need further encouragement; this is what a successful kidney transplant looks like:

Donor Cards are available from your local pharmacy or simply free text the word DONOR to 50050. When you get your card, please remember to discuss the issue of organ donation with your family and make them aware of your wishes.

Cheers,

Ann

The loss of a Healing Heart

2010-03-15T17:49:00.005Z

We lost a good friend this weekend. A hopeless romantic, whose heart balanced proudly on his (always well groomed) sleeve. That heart worked overtime for 46 magical years: loving, laughing, comforting until it finally wore out from sheer excess of love and kindness. This loss will leave an open wound in the heart of his family but also in a global community of friends.

Farewell - safe journey to wherever it is you're going. If we could beg one more favour of your healing heart, it would be to ask you to help those left behind to learn to live without you.

Although the world is so much darker for your passing, it is all the brighter because you have lived.

Cheers,

Ann

The Rogue's Progress

2010-03-13T13:39:00.009Z

It's been a funny few days, both of the Ha Ha and the peculiar variety. Boy wonder has settled down again in school after some post Christmas glitches. He is now regularly allowing me to brush his teeth with toothpaste. At school he is wolfing pots of Petit Filou yogurt and drinking water from a cup, however his lips remain sealed to food at home. This 'some places I'll eat and some places I won't' development has led me to my latest ground breaking clinical analysis of my nutritionally challenged son: it's a sure case of he's a pup and I'm an eejititis. A very common condition apparently, among six year old son's and their mothers. The only known cure is large doses of common sense and intravenous patience, in some cases it can lead to carer transplant, at it's most chronic, clinicians have been know to call in Supernanny!

Life being too short to obsess and our health being good, I prefer just to be grateful for the progress we have made; it seems like another life time when I wrote this post. Since this time last year, boy wonder and his mad mother have changed so much that we can hardly imagine how we used to cope back then, when life was so challenging. Although our support services have been moved from the Tallaght-Hospital-type basket case that is Enable Ireland - we have yet to see anyone from our new service provider. After the initial meetings in December we were told we would be seen by February 2010. February came and went, March is halfway out and still we wait. That wait no longer keeps me awake at night; I consider that to be the most amazing progress of all. I no longer feel like my son's development is being compromised by bloody minded bureaucrats. We have taken back control and we are moving forward. A sense of control is the alchemy we lacked for the last six long years. We can now transform obstacle to advantage despite the best efforts of the HSE to bludgeon us into silent submission.

We are the lucky ones, 58,000 patients who attended Tallaght Hospital for X-rays may not be so fortunate.

I am also very happy to announce that my ramblings have been shortlisted, in some very auspicious company, for an Irish Blog Award in the Best Specialist Blog Category. I am humbled by the nomination and amazed that people other than my nearest and dearest take the time to read this blog. Although I have said this many times, I will say it again - your companionship has lightened our load, and for that, we thank you.

Cheers,

Ann

Hostage to Fortune

2010-02-06T16:33:00.006Z

The problem with having a child who leaks is the inevitable laundry mountain. Daily drips require frequent school uniform changes, and nocturnal emanations contribute to damp bed linen filling the large laundry basket with alarming frequency. The only course of action for a relentless laundry pile is a reliable, out-sized capacity washing machine. I recently (and now in hindsight I realise - somewhat foolishly) openly commended the loyalty of my trusty Zanussi. 'The best thing ever to come into the house' I pontificated to a friend over coffee. Clearly, these were the proud words of a desperate housewife heading for a fall.

The following morning, I innocently went to release the previous night's bedding from the Zanussi's cavernous 8kg drum. I was met by a resolute 'Error 666' message and a door which had been seized shut in protest; my bed linen taken hostage and my wits tested. Being rather slow of a morning, it took me a few foggy moments to work out what was happening. The reality of life without a washing machine was too terrible to contemplate.

At first the repair man seemed positive, there were some signs of life "she's a lovely model alright and the motor looks like it was installed yesterday, when d'ya buy her love?" I thought, initially anyway, this was grounds for hope. With the elastic quality of time playing tricks on me again, I was unable to pinpoint the date of purchase with any degree of accuracy. However, I did remember that I had paid for it in Punts. With this, his brow furrowed and his left eyebrow twitched vertically " I see, so she's a pre-Euro model then is she? That might make the parts hard to come by" Optimism was ebbing from my every pore at this stage. We were facing yet again, another agonising wait on a transplant list. Our only chance was a fruitful harvest from some other household's now deceased pre-Euro model, with the extra large drum and the 1200 spin. He showed me the burn marks on the circuit board, the last load of heavy sheets apparently dealing the coup de grace to this once noble appliance of science.

And so we waited - and though God knows we had experience, it didn't make it any easier. I calculated the exact tipping point where my expensive trips to the launderette were going to exceed the cost of a new machine. Boy wonder was leaking just as fast as my wallet, this couldn't go on. I was on first name terms with the staff in three local launderettes - not a good sign.

Last Wednesday, we bit the bullet, and coughed up 420 Euro for a replacement. It's the large drum you see, you pay through the nose for the extra capacity. I may have to put a claim on boy wonder's future earnings, perhaps a small dividend from his Communion money in 2013?

Cheers,

Ann

To Pee Or Not To Pee

2010-01-28T20:39:00.005Z

To pee, or not to pee: that is the question:

Whether ‘tis nobler in the pipes to suffer

The slings and arrows of dodgy plumbing

Or to take a scalpel against the seized u-bends

And by a nip and tuck mend them? To plumb: to leak

No more; and by a surgery to say we end

The heart-ache and the thousand wet nappies

That we changeth daily, ‘tis a consummation

Devoutly to be wish’d.

Yesterday, after many false starts, we met with the surgeon in charge of Rory's future plumbing. There's much to consider. He's got some developmental ground to make up before we can even consider fitting him with a new run-off pipe. It's a lot to take on board. Is it wrong to be relieved that the surgery is on the long finger? I couldn't cope with another major theatre episode.

With sincere apologies to Mr. Shakespeare, but I if were indulged, I fear you may get the full belt of a very long soliloquy. I'll spare you the pain and go instead to research the latest in juvenile plumbing.

Anyone got a secondhand copy of that revered tome: Bladder Augmentation for Beginners ?

Cheers,

Ann

Dear Make A Wish

2010-01-14T20:02:00.010Z

Dear Make A Wish,

A thank you letter seems too inadequate to express what I want to convey. You have not only sent us on the holiday of a lifetime, but you have also opened a door to a world of possibilities sealed shut for so long, that we had given up trying to pick the lock.

Let me try to list some of the joys you have bestowed upon our family: thank you for giving Rory the chance to stand up in a crowded Aer Lingus Paris-bound flight and instruct a whole plane load of passengers in his best school teacher voice, that he wanted ' Gach duine isteach sa line' so that we may disembark in an orderly fashion. Thank you for allowing Jess to walk up to French immigration officers and show her passport like a pro, while telling them to get a move on as time was ticking on her three day Euro Disney pass. Thank you for that wonderfully kind driver who met us at the airport, all breathless with enthusiasm for the Disney delights awaiting boy wonder and his big sister.

Thank you for the hotel; sparkling like a New York department store on Christmas eve, where we ate pizzas shaped like Mickey Mouse and splashed in a pool shaped like a ship. Thank you for giving our kids the chance to giggle 'till midnight and order room service like pampered celebs. Thank you for the magic of three whirlwind days of wide-eyed wonder surrounded by Goofy, Mickey, Minnie and friends. Thank you for a Monster's Inc Mike toy, discovered in the back of the gift shop after years of searching, which by the way, led to an emotional reunion with Sully back in Galway. Thank you for the glee of the Peter Pan ride, the wow of the Studio, the twinkle of the lights, the fairy dust and the kindness of strangers.

You have broken our travel taboo, we have found our lost courage and are now ready to take on the world. We have started to plan again, you have no idea what that means to a family who, for six years, have been locked into their own high tech medical world of hospital visits and sleepless nights.

Our wish was for a normal life but you gave us the world.

Thank you,

Boy Wonder and family

Merry Christmas

2009-12-24T17:57:00.001Z

Merry Christmas and a very happy New Year from Boy wonder, Jess, Chicken Lickin and the other kidney!

All My Birthdays and Christmases!

2009-12-09T18:47:00.002Z

I'm still in shock and maybe it's because I didn't see it with my own eyes, so I still can't quite believe it. But I am more than elated to announce that boy wonder ate (yes folks you read right, 'ate' as in consumed via his own mouth)... five half tea spoons of petit filou yogurt at school today!

This may be a flash in the pan (or in this case the 'yogurt pot') but it could also be the start of something truly miraculous. I don't dare to hope...

Now if that doesn't cheer you up, I don't know what will.

Cheers

Ann

The Translator Resigns

2009-11-19T20:50:00.005Z

Well, in the titanic battle that is Barrett vs The services: round # 603 went to Rory! He has just been approved for 3 resource teaching hours a week. It only took three months, 60 phone calls, a small woodland dell worth of paper, a large lump of expletives and a crash course in relaxation techniques. We were lucky this time to escape with only minor bruising and some superficial wounds.

The outcome of Barrett vs Crumlin Hospital is less clear however. A week after my last post, and completely out of the blue, we received another letter reverting our appointment back from Jan. 27 to the original date - Nov. 18. Confused? I hear ya! Needless to say, the other kidney had re-arranged work and could no longer make it on Nov 18; the new correspondence only giving us 48 hours' notice. So, we will now re-revert (if you follow me) to the January appointment. I'm feeling both battered and baffled.

Another notable notch in our battle belt was recorded last week; it appears our services have been transferred out of Enable Ireland. Steady on! It's early days, and I fully expect a mega misunderstanding before we so much as get within a whimper of another ologist, but it's these little victories that get me out of bed on these dark, damp mornings!

If and when, a therapist or ologist appears out of the murky mist of the HSE West, trust me, you'll be the first to hear about it!

Translation? I give up!

Cheers,

Ann

Reasons to be Grateful

2009-11-12T17:42:00.006Z

I can't believe it's two years since this day; and this one. The anniversary of the transplant that kicked off this blog is being celebrated in style in our house. To all of you who have walked this road with us, we say: thank you, from the bottom of our remaining internal organs!

Please know that you have played a fundamental role in our survival and success. So raise a glass to organ donors everywhere, but in this week of rememberence, let us also think of those who have not had our good fortune.

Thank you for sticking with us: it has made a really big difference in our lives.

Cheers, (she said raising her glass..)

Ann

Lost in Translation.

2009-11-06T16:11:00.011Z

Why must I stupidly insist on using norms from the real world, when experience has shown me that the rules on planet HSE are very different? Whether from innocence, indolence or ignorance I'm not sure, but I repeatedly fail to decipher the secret scripture of the health service. For example: when is an appointment not an appointment? I've recklessly been walking around all these years, using various reputable dictionaries as my point of reference when I didn't understand the meanings of certain words. For instance, with a word like appointment: I understand it to be a noun meaning an arrangement to meet at a certain time at a certain place. Please feel free to correct me if I'm mistaken here.

With this in mind I had cause recently to ring Crumlin Children's Hospital, (ah yes, my old Nemesis), to confirm a pre-op plumbing appointment for Nov. 18. After tearing through some telecommunication traps, I eventually happened on a fellow human being at the other end of the line; a rarity these days. After barking a request for Rory's rank and serial number, she confirmed his appointment for said date, time and place. Great, now I had it in writing with a follow up phone confirmation. I figured I was pretty safe in the assumption that, I indeed, did have, an appointment. However, less than 17 hours later, a letter arrives: changing that appointment. Confused? I know I was.

OK, so here's the thing: did my phone call set off a whole chain reaction which led to alteration of the appointment? In which case, wow, in under 17 hours, they work fast! I think you'll agree, given past experience, that is most unlikely. Or, is there, somewhere buried in the bowels of Crumlin hospital, a left hand, who surreptitiously changes everything that the right hand, above ground, is doing? Apparently, I now have an appointment for 27 January next, which by the way, will be almost 12 months after the appointment was first requested. Could this be the case? It might be; but then, I'm too terrified to ring and confirm it.

Recently, Rory received a diagnosis of Dispraxia from his Occupational Therapist. With such a diagnosis, he is entitled to have three hours a week, one to one, extra resource teaching in his school, to ensure he doesn't fall behind his class mates. The report was sent to the National Council For Special Education (NCSC), by all accounts: a most reputable Quango. The reply was another exercise in definition dodging. When is Dispraxia not Dispraxia? Well, apparently, in NCSCeese: ' when it doesn't impact on your education in school'. I didn't realise you could successfully complete an education when your brain had major problems telling your body what to do. Seemingly, under the new NCSC definition: Dispraxia's a doddle. For all they know; he may only have a touch of Dispraxia, or the OT was having an off day, when she wrote the report. A diagnosis, after all, might not mean he actually has the condition - in NCSCeese, so to speak.

In an effort to comply with a whole new public service dictionary, we will now occupy more scarce school time and resources filling out more forms and reports, in order to re-define an established condition, with a view to meeting the criteria of the Irish system. Are you still with me here? Exhausting, but brilliant: you see without this duplication of duties, you could never justify the numbers employed to stop children getting access to their entitlements. You couldn't make this stuff up; but, obviously, they can.

To the HSE and the Dept. of Education: I bow to your bureaucratic brilliance. I am in awe of your awfulness. I am humbled by your lack of humanity and intelligence. It is reassuring to know, in these days of fiscal frugality; that you are doing your utmost to keep meagre resources tied up in paying mad Mandarins, rather than furthering children's health and welfare.

Some day, when I finally learn to speak fluent HSEese, I might be able to make sense of all this: but until then, I remain, confused.

Cheers,

Ann

The Wisdom of Youth

2009-10-23T19:38:00.004+01:00

I bundled these buzzing beauties off to school in fancy dress today. All dressed up for the mid term break party, Jess in her gothic glory and Rory as a Batman rip off!

As we walked to school, Jess mused aloud about how the other boys in Rory's class would be dressed. "I'll bet they all come as superheroes" She pronounced with some authority. Sensing the question forming on my lips, she then quickly expounded: "They're always superheroes until they get to first class; then they turn into baddies!"

There wasn't really much I could add to her theory, it was, in her eyes, complete. Who am I to argue with a 9 year old sage?

Cheers,

Ann

Punching Politicians

2009-10-11T11:36:00.007+01:00

I listened to James McDonagh as he burst into the Green Party conference on the news yesterday. I heard his anger and frustration, while his distressed 11 year old daughter asked him to stop shouting. As the tears rolled down my face, I realised that it could have been me. I know that anger, that fear, that frustration brought on by exclusion. His child has special needs and has not attended school for a year, as there is no school to take her. She urgently needs speech therapy, occupational therapy and psychology services. Are we seeing a pattern here?

I thought of his state of sheer helpless hopelessness, at his wit's end, as official after official gives him the brush off, blaming cut backs for this 'regrettable state of affairs'. I remember planning acts of civil disobedience, I remember fantasizing about chaining myself to railings. One of my more brilliant plans involved defacing all the signage in Galway Community Care offices, by inserting the word 'don't' between Community and Care. I had even enlisted the support of other frustrated parents. Then Rory got sick and priorities shifted. I still regret not doing it. I know it was pointless and petty; but boy, it would have made me feel a whole lot better. The problem with dealing with grey bureaucrats, is the contamination factor; you begin to sink to their level of small minded power struggles. It is extremely difficult to retain your dignity. I was lucky to have the other kidney filter my more militant moods.

I have worked very hard to rid myself of the residual resentment and anger. The counselling helped for a while, until it began to seem pointless. Wine was also a pacifier, but had crippling side effects! Diversions such as a movie, a trashy novel or a night out with friends, provide temporary relief, by pressing pause on the angry whirring of your brain cells. However, there is nothing, (and believe me I've researched this at length, so I know of what I speak here), that will stop the gnawing sense of dread which wakes you in a cold sweat in the dead of night. The fear for your child's future, because you can't get the help needed to get them through the difficulties they face in their childhood. It's crippling, all consuming and no parent in any civilized world that I want to inhabit, should have to go through it. Have we learned nothing from our sordid past?

The sad fact of the matter for Mr McDonagh and his family, is that even if their daughter is given access to services, as is her right as a citizen of this state, the quality of service is based on an arbitrary post code lottery. Like us, she may meet a speech therapist who has been disbarred for unsafe practice in another jurisdiction. Like us, she may meet a psychologist, so uninterested in his job, that instead of trying new means to engage with her, will write her off as a vegetable, because he couldn't be arsed to even do a Google search on her condition.

At 11 years of age, she will doubtless fall into a black hole between primary and secondary school services. She could be really lucky, and make great progress with one practitioner over a few months, only to be transferred to another service and another waiting list because her current therapist must stop seeing her at the age of 12.

Rory is now aged six, and therefore outside the scope of that laughable oxymoron called Early Intervention. We have no idea who will take over his services. Enable Ireland have still not made a real commitment to Children First Child Protection Guidelines; so we cannot on principle, allow any new therapist to see him, having no guarantee that proper background checks have been carried out. He will yet again be without services, although for the purposes of official HSE records, he is listed as receiving a service, even if we have to join another four year waiting list.

What I have learned through all of this: is to trust my child. To have faith in his ability. By giving him space with lots of love and laughter, he has defied all the hideous limitations placed on him by grey officials, jaded by their jobs. If I had listened to them, my son would have been institutionalised by now, instead, he is holding his own in an Irish language mainstream school. We are fortunate that there appears to be no underlying developmental disorders, although if you listen to our speech therapist, she will try to tell you otherwise. She advised us against mainstream school, I ignored her. When I told her how well school was going, her terse response was: "I wonder how long that will last?". I'm very proud that I didn't punch her lights out, much as I may have wanted to. It's a sign that I've moved on. Mr McDonagh and his family have a long and difficult road behind and ahead of them. His isolation is palpable. I want to storm the gates of Leinster House with him. I want to punch John Gormley, Brian Cowen and Batt O'Keeffe for him. What will that achieve?

Did you know that President Mary McAleese is the patron of Enable Ireland? She, of the glowing tributes to the victims of institutional abuse. I wonder if she knows that her name lends an imprimatur to an organisation which does not adhere to even the most basic child protection principles?

Well done Mr McDonagh, I salute your bravery, your indignation and your protection of your child. I wish you strength, comfort and solidarity. But mostly I wish you a life where your daughter is allowed to fulfill her potential, and you can get back to getting some restful sleep at night.

Cheers,

Ann

Old Wounds And New Wonders

2009-09-19T09:46:00.015+01:00

Did I ever mention that Our Lady's Hospital for Sick Children in Crumlin gives me a severe debilitating does of the wobbles? Since it has been the location for some of the darkest days of my life; I try to avoid going there at all costs. My avoidance tactics ran out last Thursday when the elastic on my get out of Crumlin chord snapped. A minor problem with boy wonder needed to be seen by a urologist. The urologist in charge of junior's plumbing second fix, is based in Crumlin, so, reluctantly, we returned.

The other kidney said he felt like he was experiencing post traumatic shock disorder. I knew immediately what he meant. The first year of Rory's life is a blur for me, the stress and trauma was so intense that I just prefer to park it in the past where it belongs. However, no matter how hard we try to restrain it, that old skeleton can't help giving the cupboard door a really good rattle every now and again. Lest we get ahead of ourselves!

I find it very hard to distill the essence of my aversion to Crumlin, it's a volatile cocktail of fear, rage and despair. The staff were wonderful, warm, professional and caring, the conditions on the other hand, were somewhat akin to those of a Romanian Orphanage circa 1988. These pictures will give you a taste of how we lived for three months while we learned how to dialyse our new kidneyless baby:

Back in 2003, there was no dedicated renal ward in Crumlin so we were housed in a general baby ward and exposed to all those baby infections that rear their snotty little heads every winter. Rory picked up everything that was going; many a weird and wonderful virus. One of those nasty doses landed him in back in ICU on a ventilator when he was about 7 months old. Now that was a dark day.

For respite, we had the parents' accommodation. Again it was warm and welcoming but it hadn't been decorated since the 1950's. Anytime I stayed there, I couldn't help feeling like I was sleeping in the middle of a John McGahern novel. Suffice it to say the surroundings were not conducive to the recharging of flat parental batteries. I shuffled round that hospital like a zombie for months, until one day I was, quite literally, shocked back into the land of the living. 120 volts it was, delivered with a flash as I plugged in the dialysis machine to this socket:

That was the day I got my fight back. The shock lifted me off the floor and out of my torpor. I got angry, proper red rage spots in front of the eyes, angry. That ward has since been fully refurbished and there is now a dedicated Renal ward in Crumlin hospital. Maybe someone did actually read all those letters I wrote.

I listened to the stories of organ donation on Liveline during the week, and was yet again reminded of our extraordinary good fortune.

As I type, boy wonder practices how to burp on demand, just like any other six year old boy, delighted at his new found skill.

Cheers,

Ann & Burping Boy Wonder!

School Report

2009-09-05T11:27:00.003+01:00

Well, week one is over. It was remarkable in it's ease, order, lack of stress and quite frankly, at the risk of boring you all...... normality!

Rory managed to sit at a desk for incrementally longer periods each day. He won stars for helping others to clean up. He held crayons, coloured pictures, played in the yard, sang songs, and sat with his classmates while they ate their lunch. By Friday, he even licked a Malteeser!

His Special Needs Assistant (SNA) is a qualified nurse with years of experience in a special school, where kids had been fed through every orifice, so boy wonder's NG tube is, dare I say it, nigh on normal to her! She manages him with such ease, grace and good humour, that he is more than happy to comply with her rules. I'm already wondering if she'd consider moving in with us!!

His teacher is warm, charming and a consummate professional. You can see the kids are just hanging on her every word. It's so lovely to watch a nurturing introduction to education. Thankfully things have changed since my days in primary school; where my abiding memory is one of terror.

I re-started my own formal education on Friday. It was quite a flashback walking round the campus of Galway university. It's been a very long time since I sat in a classroom. When I looked round at my classmates it was very clear very quickly that I was very much the elder lemon, by a very very long way. It's daunting but exhilarating.

My brain shrinking, lobe lumping, temple throbbing form filling exercise paid off as I am now the proud recipient of higher education grant. This affords me a second chance to rebuild a working life, for which I am extremely grateful.

This year will be busy, we'll be under pressure, but it'll be a pressure of our own choosing.

Cheers,

Ann

Milestone Mania

2009-08-31T16:14:00.005+01:00

His enthusiasm caught me off guard. I had grown accustomed to his refusals. His default negative responses when faced with any mention of the word school. "Bye Bye School" had been the catch phrase of the last few weeks. Rory's like that though, he just says no to everything; just in case.

This morning when I crept in to give him is 7.30am feed and meds, he was still bundled under the blankets snuggling up to bear. I worked away at his tube, able to carry on without disturbing him. His eyes opened, just a crack, he took in the light grey morning sneaking in between the curtains. He sat up, and announced, "I'm going to school today". This was a promising start. I thought it best not to rush him so I let him have a little lie in, a few moments to contemplate his new educational fate.

We busied ourselves with the usual morning routine, uniforms were donned, toast was crunched and caffeine was administered in strong doses to the grown ups.

His regulation grey trousers were proffered, and accepted, along with the grey shirt and school jumper, which he had previously deemed to be too 'scratchy'. All were put on without so much as grunt of protest.

I had expected, if not an all out battle, at the very least some very vocal objection, none were forthcoming. He was positively jovial at the thought of the uniform. He completely blind sided me, with his cheerful acquiescence. The lump in my throat came on very suddenly and before I could swallow it down, the tell-tale brimming of the lower eyelids began. I could feel a full scale wobble coming on. It seemed completely disproportionate to the situation as Captain Sensible, just popped on his shoes and asked for his Madagascar school bag. Fair enough, the kid was going to play it cool!

We snapped the obligatory photos, the kids chuckled and off we went.

Simple as that.

The entry to the class was equally low key. He sauntered in like he owned the joint. Charmed his teacher and Special Needs Assistant.

"Slan, Chickenlicken, see ya later" was the last I heard as I rushed out the door - the fear of making a complete show of myself was now even more acute. I had one aim, get past the school gate without making eye contact with any other parent.

I hadn't allowed myself to imagine this day, it seemed far too presumptuous. Now that it's here; all nonchalance and normal, I don't quite know what to do with myself!

It has taken us six years to come from this :

To this :

Sometimes the enormity of normal just knocks the stuffing out of me!

Cheers,

Ann

The Big Six

2009-08-24T10:39:00.006+01:00

I can't believe it's six whole years since you blasted into our lives full of fire and fun. You arrived with such a love of life, clenched, vice like, in your tiny fists. Now your hands are bigger - you can pack more in.

Happy 6th birthday boy wonder, long may you continue to amaze us.

Cheers,
Ann

P P S Anyone?

2009-08-12T17:44:00.005+01:00

Can anyone tell me what exactly a PPS (Personal Public Service) number is good for? I have had cause to ponder this a lot lately. To me it seems like a quirky little Irishism, like the way you might be asked what your mother's maiden name is, or where your people might be from.

Public servants seem to either worship it or ignore it. The neat box designed to hold those hallowed digits seems to blink like a talisman for every civil servant in the land. But what exactly do they do with it?

I, of course, am far too literal and logical to ever fathom the depths of the mandarin mind. The twists and turns of those firing synapses when faced with official form filling completely bypass my sub civil servant brain.

Let me illustrate my point. I am a full-time carer, in receipt of carer's allowance; a social welfare payment which is means tested. Therefore, my means are below a certain threshold.
That's all quite straightforward. If you look up my PPS number on 'the system' it well tell you this.

I have recently decided to return to part time study. I figured I should up-skill in preparation for the day when my carer's duties reduce. I could then re-enter the work force, and maybe pay some taxes. I waded through an ocean of literature on entitlements, what one could and couldn't do in my situation. I made numerous phone calls to the nice people in the carer's allowance section of the the Dept. of Social and Family Affairs. I followed their instructions to the letter. I was officially sanctioned to apply for a Higher Education Grant. I receive the form, and am told, I have to be means tested again. But what about my PPS number? Surely it will give you all the information required? If the good people in the carer's allowance section are deemed competent enough to means test for social welfare entitlements, could we not save a whole other mountain of paper and just, you know, take their word for it?

Absolutely not! They are a completely different section of the public service, a whole new means test is essential.

So I fill out the form, queue for an hour in the dole office, taking up time that could be spent processing the many new claims, they look up my PPS number on 'the system'. It confirms my income threshold and that I am indeed a full-time carer, married with two dependent children. They then stamp the lovely pink form which has been printed by those nice people in the Higher Education Grant office and return it to me.

I then go and queue for my long form birth cert. It costs me 10 Euro. Does my PPS number not tell what age I am and that I was born in Galway some time towards the latter half of the last century? Obviously not, because the nice man in the register of births office spent quite a bit of time looking up my details on 'the system', of course this may not have been the same system.

Then the other kidney gets dragged into the fray, because I have to prove that he was mad enough to marry me 11 years ago, and that we have been living together at the same address for at least the last 3 years. He also needs to 'fess up again to how much he earns, which you know, we already did when I applied for the carers allowance. Then he needs to sign the nice pink form, to prove, well I don't know what exactly. That I have his permission to go back to education?

So then, after a week of queuing in offices and collecting various coloured forms, I bring them all to the nice man in the Higher Education Grants office. He then photocopies all my documents, stamps them, returns the originals, asks for some more evidence in paper form, and sends me on my way. Couldn't he have looked up all of this on my PPS, I am in 'the system' you know? No, they need paper proof!

I had just about recovered from this when, in a rather foolhardy gesture, I now realise, I rang the form E112 people. You know that office that eventually let us go to London to the feeding assessment clinic?It turns out she also needs a form, except this one is white, not pink.And guess what?She needs to means test us! I sheepishly suggested that, since I was in receipt of social welfare which was plain for all to see when they looked up my PPS number on 'the system', that maybe we could forgo the repeat means test. No she needed paper proof!

Am I missing something here? You see, from where I'm standing this seems like the most extraordinary waste of the little gem that could be the PPS number.

If I was a PPS number; I would be Pissed off, Put out and Sulking at this stage!

Cheers,
Ann

Hope of Peace

2009-08-04T20:50:00.009+01:00

An old friend took his own life yesterday. As the shrapnel of his loss ricochets around his family and friends, it makes me think; there, but for the grace of God, go all of us.

I wish him the peace that so eluded him in this life. I hope he now feels safe.

I remembered this Seamus Heaney poem called The Rescue, it made me think of all of those who tried so hard to save him.

In the drifts of sleep I came upon you
Buried to your waist in snow.
You reached your arms out: I came to
Like water in a dream of thaw.

Safe journey home.

London Calling

2009-07-17T22:40:00.008+01:00

I don't quite know where to begin, such has been the level of activity in our hive of late. You may remember I mentioned a feeding assessment team in London. The very sensible developmental paediatrician in Galway had offered to refer us there last November. All very straight forward you might think. Yes very straight forward indeed. As with everything associated with the HSE, it took two visits 4 months apart, approx 662 phone calls, a small forest worth of paper work, 5 hours of misinformation, a bottle of gin (- mine -medicinal ), a very near urge to take up smoking after 9 years of abstinence, and a partridge in a pear tree to actually make it all happen.

A word to the wise here, if ever you are considering dealing with long term illness and the HSE, please, please go into training. Some ex-special forces type boot camp, with some serious 'what to do if you get captured in the desert by the other side' type psychological expertise thrown in. Without it, I fear you may crack at the first hurdle. As I have been doing HSE time for almost 6 years now, my energy is prone to the odd dip into despair. At just one such trough, the bloodhounds in Temple St, came charging down the hill to my aid. They got on the phone, they set up a rota, they badgered, they pestered, pleaded and I dare say even threatened until one day 3 weeks ago, an appointment was extracted at metaphorical gun point. It left me speechless, a rarity for me I can assure you.

We sprang into action, a scramble for the dog eared London A to Z. Pins were stuck in the Tube map, cross referencing address books to see who would be kind enough to put us up for the night. A plan percolated quite quickly. The other kidney was up to his eyes with work so another grown up had to be found to help with the journey. Auntie Mags, yet again stepped fearlessly up to the plate. (One of these days she's going to wise up; and we'll be in big trouble.)

So, on Tuesday, off we went, the 3 of us, on our adventure to see the nice man who was going to talk to Rory about eating with his mouth. Rory agreed to come along but was only going to give this nice man, a very brief moment of his time. Eating with his mouth, while still a hot topic of debate in our house, is paid only, lip service, by Rory!

He handled the journey with aplomb - a seasoned air traveler, the plane held little fascination even though it had jet engines and was actually leaving the country. This was nothing compared to the train that whisked us from the airport. It had conductors in uniform and a whistle at every station; now that was the epitome of cool.

I watched with wonder as he took all of this new environment in his stride, only complaining when we weren't seeing the nice man immediately we landed, as he was in a hurry to get back home.

We got to see the nice man, a gastroenterologist, and his team, a speech therapist, clinical psychologist and a dietitian, at midday on Wed. Rory showed his usual cool, interrupting the proceedings only occasionally to insist that we go to the airport, but generally charming the entire room.

I don't really know what I expected from the visit, I knew in my heart there was no magic bullet for this situation. I did wonder though, if there was something we hadn't tried. I also had very precise questions about Rory's motivation to eat and his ability to recognise hunger. It was really refreshing and comforting to sit in a room with people who see kids like Rory every day. They made no assumptions, no tut tutting, no; I can't classify him, so I should really concentrate on what he can't do instead of what he has achieved. None of the usual; I have no barometer with which to measure, so I'll just go and use the worst case scenario scale, the default setting.

They just agreed, concurred that yes this was all totally normal given his experience. They marvelled at what he has achieved. They gave some very helpful advice, explained some of the probable psychological processes going on for him right now and praised us all in how far we'd come. It was quite amazing really, they had so much faith in Rory, I was almost taken aback. I'm so used to having his shortcomings pointed out by therapists. They just confirmed my gut feelings - let him explore the world, let him get used to feeling well, and most importantly let him lead us.

I had been giving myself such a hard time that I hadn't been consistently working with food in a very structured manner. They understood the difficulties involved and suggested we work on the fly, choosing only activities that he enjoyed. No forcing, no reward system, no passivity. He has to learn to experience and enjoy tastes for himself, not to please someone else. It makes so much sense, I had always felt this but I was a lone voice here in the West.

Very interestingly, in light of last year's Enable Ireland fiasco, the gastroenterologist agreed that any investigations into his ability to swallow are pointless at this stage. We have no evidence to suggest there is a problem, and testing would be hugely traumatic. If you're reading this; Miss crazy lady speech therapist; can I just say, in as smug a tone as I can convey in writing?
I told you so!

I just hope that you are not still working with vulnerable kids, because it has taken me exactly one year, almost to the day, to prove the irrevocable damage you could have done to my son.

Next time you try to bully a parent, just remember you are only a Google search away from being found out.

You have been warned.......

Cheers,
Ann

A Tale of Two Days.

2009-06-23T20:48:00.004+01:00

I remember it was very hot that August night. Somewhere along the road from Galway to Dublin, Saturday had turned into Sunday. My neck was sore from staring at the car wing mirror for 3 hours. I was straining to catch the blue flashing lights as the neonatal ambulance carrying our 2 day old son sped passed. I never saw the lights. We arrived long before them. My apprehension intensified. The ICU staff were surprised but welcoming. We were led to the parents' room down a corridor into a foreign land. Machines beeped, whooshed and pumped. Kids were plugged in and zoned out. Parents keeping a vigil by their beds. Staff were calm, in control but very serious. We were in big trouble, I knew we wouldn't leave this foreign country for a very long time, and when we did, our lives would never be the same again.

The ambulance team arrived about an hour later. They assured us all was well. Rory handled the journey and was reconnected to the ventilator in the adjoining room. It was time to let the staff do their job, someone asked if we wanted to see a priest. I declined. Tests on tiny babies take time, a lot of time. At 3.15 am a very kind consultant urologist knocked gently on the door and introduced himself. First names only, no room for titles or white coats here. He was shaking his head, not in despair, but in disbelief. It had never been seen before. No kidneys but, as he put it, lungs in pretty good nick. This was one hell of a fighter we had. We're not sure though, it's never been seen, we need more expertise. They'll be here in the morning. So we were asked to wait.

I've learned a lot about waiting since then. At that stage, I was still a novice; I didn't cope very well. 12 hours of wondering would we have to steal a last look, kiss him goodbye and turn off a whooshing machine. 12 hours of hell. I couldn't sleep and, having just given birth; sitting was still a challenge. So I walked, I walked every corridor in Crumlin hospital, railed at every holy statue and blessed virgin mocking me with their benign, trust in Us eyes. For those of you lucky enough not to have darkened the doors of that hospital, believe me that's a lot of eyes!

The night stretched into day, the morning bled into afternoon before we were released. His lungs came up trumps. The risk was worth it. It would be tough, there would be a lot of time spent in hospital, there were no guarantees, but he was given good odds. We grasped that chance with both hands and ran like hell! In the space of an hour we had re-ordered our lives, secured a house to live in, plotted our move to Dublin and remembered how to breathe in and out.

Today was just as hot as that August night, but today, he walked into his new classroom, smiled at his junior infant class mates, turned to me and said 'see ya later chickenlicken'.

What a difference a day makes.

Cheers,
Ann

These Are Good Days

2009-06-09T13:48:00.011+01:00

It's been a great few weeks. The sun had it's best millinery out, and we basked in sumptuous sunshine. We ate in the garden most nights, swam in the chilly bay and ate ice cream till we felt sick.

It all started with Jess' communion - a really memorable day, not for any blingtastic bashes, but just for the fact that we had a celebration. I realised as our neighbours joined us for tea, cake and the odd drop of something stronger, that we had never had the occasion to invite them in before. We've been literally firefighting for almost 6 years. It was lovely to kick back and share a laugh.
It also gave us a long overdue chance to say thank you to all of you amazing people out there, who have opened your hearts, houses and arms to us during the dark days. Look how far we've come, now take a bow all of you, because we couldn't have done it without your support.

We can even report progress on the psychology second opinion. We had our first session last week with the new psychologist, and there's another tomorrow. So far, she appears to be of the non furry, string operated variety, but we will reserve all judgement till the final report. Just the old superstition of chicken counting and eggs hatching, you know how it is.

Plans for Rory's launch into full time education in Sept are gathering pace. So far, we seem to have dodged the cut backs and it looks like he will be approved for a Special Needs Assistant. Again caution is advised on chicken head counts here also. But fools that we are; we live in hope.

I've been busy trying to keep fit - remember those new years resolutions? In an effort to put my money where my cake hole is, I signed up for a sponsored swim (well two actually; but more about that anon). So far we have raised a tidy sum for the Ian Daly Swim a Mile with a smile for Barretstown. Feel free to log on and donate to this wonderful cause. I nearly had to be hospitalized and it cost me a fortune in physio, but I did it. I was not alone; auntie Mags, complete with dodgy arm was one of our star swimmers. A huge thanks must also go to Orla, Jen and Damien in the Ardilaun leisure club, who, bless them, didn't need any coercion to get involved. So we're all feeling nauseatingly smug at the moment!

The twists and turns of this journey will always catch me off guard. This blogging business has become such a major part of my life. I am now involved in the lives of people I've never even met. I worry about their kids, their desire to have kids and their on going health issues. They, in turn come and visit here, to leave messages of support and encouragement. But today, I was literally blown away by two posts.

Steph is facing some major surgery, but with an optimism and chutzpah that just takes the floor from under me. She is an inspiration. The other major news is that Xbox is going to be a Dad.Big sissy that I am, I wept with joy reading that post this morning.

Of course I've heard nothing back from Enable Ireland, but honestly, did you expect anything?

These are good days; so lets not waste them.

Cheers,
Ann

Enough

2009-05-26T09:23:00.004+01:00

It's been a draining week. Listening to the catalogue of crimes against humanity perpetrated by the Irish state and religious orders has been very disturbing. What has caused me most pain is the response of the HSE, assuring us that it can't possibly happen now as there are safeguards in place.

This is not true. These so called safeguards, of which they speak, consist of a voluntary code of practice called The Children First Guidelines. They have no legal basis and are not uniformly implemented across the sate.

Last summer my son was put at risk by a dangerous therapist working for Enable Ireland, an organisation which claims to adhere to these safeguards. When the risk was exposed; they lied, bullied and hired very expensive legal counsel. No action was taken. Although they have been proven to be in breach of Children First Guidelines, there is no sanction available for this breach. I have no where to go with my complaint.

Last week, just prior to the publication of the Ryan report on Institutionalised child abuse in Ireland, they sent me yet another waste of paper in response to their negligence towards my vulnerable son. I am no longer prepared to engage in a game of paper ping pong with people who do not share a decent moral code. This has to stop.

I've had enough, so I wrote this letter:

Director of Services,
Enable Ireland
Seamus Quirke Road
Newcastle
Galway

May 25th 2009,

Dear Clare,

I was dismayed to receive a copy of your ‘Protocol for the management of suspected child abuse’ on May 8th last.

The risk, to which my son was exposed, by the lack of adherence to the Children First Guidelines during the dismissal of your speech therapist, has already been established. The time for sending me this document has long since past.

In a week which has seen the publication of the Ryan report on institutional child abuse in this country, it is deeply distressing for me, as a parent, to see that organisations charged with child welfare are still failing our most vulnerable.

Please stop prevaricating, I want you to carry out a full disciplinary hearing on why this was allowed to happen to my son, I want to know exactly how many other children were put at risk. I want cast iron, binding procedures put in place that will ensure this will never happen again.

This is a moral and ethical issue, please stop hiding behind bureaucracy and be big enough to take a stand on child welfare.

I would be grateful if any further correspondence from you detailed only action, not excuses.

Yours sincerely,

I doubt I will get a meaningful response.

Cheers,

Ann

MacGyver Moments

2009-05-10T19:40:00.010+01:00

Rory's personal plumbing can best be described as unorthodox. He passes urine through a little slit in his abdomen. For a lad that never peed until way past his 4th birthday, we consider it a major achievement - it could come out of worse places!

Management of this uber alternative u-bend, is pretty straight forward, but it does require a certain level of inventiveness. During the day, we slip a pad into his nappy to collect the constant drip. This pad is a classic of the maternal necessity, school of invention. Pad's, of the like required by our lad, are not what you would call, an over the counter item. They are the product of much discussion, trial and error. Thanks to the bright sparks in Temple St., we happened on our current model; a new born nappy cut in half with a strip of Mepore tape stuck across the top.

I tend to make them in dozen batches, usually while watching telly in the evening. It's a real Blue Peter experience, scissors, sticky tape - the whole kit. I have it off to a fine art now and can rustle up a batch before the tea is even drawn! The pad usually lasts just shy of about two hours before the telltale wet patch becomes visible on his shirt.

At night we attach a bag with a 2 litre capacity, although a late starter, he now pees like a pro.There is no road map for urine routes such as his. He's a one off. A bit like speeding up the M1 before the official opening, without a sat nav. Each new stage, has us scratching our collective heads.

We've arrived at an un-signposted cross roads. The tube, his almost new ureter, which conveys the urine from his reconditioned second hand kidney, is also a miracle of recycling. This ureter came with the kidney and, well, although it came from one former, carefulish owner, it has been around a couple of decades longer than it's current owner. In short, and really no pun intended here, it is not going to grow with our bolting boy. Here's where the law's of physics are very visible, as he grows the ureter is stretched, and as this tube stretches, the hole at the end gets narrower.

We've been monitoring this for a while, we even had the opening surgically dilated in Crumlin back in February. After this procedure, I was granted yet another unenviable medical task; that of stretching it daily. Now, I've learned some procedures, since Rory was born, many were not pleasant; injecting EPO into a 3 month old thigh, passing NG tubes, but I did them as they were keeping my boy wonder alive. But, I have to fess up here and admit that stretching a urostomy with, what looks, for all the world, like a stainless steel crochet hook; is, put mildly, my least favourite procedure to date! I often wonder, if years from now, he'll fill expensive hours of therapy with memories of his mother plunging stainless steel hooks into his stomach! Well at least it'll give him something colourful to recount!

I noticed last week that my daily stretchings were becoming a much more difficult affair. The opening was getting visibly smaller. Now as you can imagine, I watch urine flow down his plastic bag at night, in the same way that a new mother neurotically checks that her new born is still breathing. An interruption of flow is just too horrifying to even contemplate, so it was with a heavy heart that I contacted the hospital on Friday morning.

I had prepared myself to leg it to Dublin. Luckily, the other kidney was not away on one of his very frequent 3 week work trips abroad. So on the face of it, a Friday dash to Dublin was completely manageable. Jess could stay with her Dad, while boy wonder and myself crossed the country. The phone calls back and forth were promising, maybe we could hold off on the dash. A variety of surgeons and ologists were consulted, and finally arrived at the solution of getting a smaller crochet hook! Simple yet brilliant. For the sake of expediency, it was suggested that I try to borrow one from Galway hospital.

I phoned the always helpful Paeds dept. I was greeted with the usual warmth, concern and large doses of common sense. The nurse who answered, gave me all the relevant contact details, but just as we were winding down the conversation, she asked if the implement in question was available in Temple St. When I confirmed that was the case, she suggested I get them to put one on a train to Galway immediately as it would be a lot quicker than trying to track one down this side of the Shannon. I was instantly struck by the genius of the suggestion.

So, our sainted consultant in Temple St procured the implement, and I called our former dialysis taxi driver to pick it up and deliver to Heuston station. Fortunately, these two links in the chain are made of solid gold. The consultant personally packed up his two preferred options, and the taxi driver charged through lunch time traffic to meet the 14h35 to Galway.

She arrived on time, only to find a sign proclaiming that Fastrack had ceased trading! Now, way back in the days when I had a career, Irish Rail's courier service, Fastrack was my very flexible friend. I could practically recite the timetable by heart. How had this bastion of Irish communication, the purveyor of all things provincial, been closed without my knowledge? I was dumbfounded; now what?

The taxi driver said she would investigate further. The next phone call, was a hoot! I have no idea what she said, threatened or promised, but all I know, is that the package was thrust into the hands of the train driver who personally guaranteed to deliver it into the hands of the other kidney in Galway station! I love it when the old Ireland shines through all the shallow gloss of progress!

By 17h22 the new smaller medical thingamagiggy was in my hands. All it took was a further call to the consultant to compare size with our current incumbent and the job was oxo!

MacGyver would have been proud.

Cheers,

Ann

The Rogue's Progress

2009-05-05T19:50:00.005+01:00

For some reason, I have a really vivid recollection of last year's May bank holiday weekend. I remember the weather was beautiful, we spent most of it in the garden pottering. Rory was battling a cold and I was sure we wouldn't see out the weekend without a transfer to Temple St.I was wrong, he beat the bug. It was the first time he shook off a dose on his own, a big milestone. I really began to readjust my radars, his new kidney was changing the rules of our lives in so many ways, we almost had to learn a whole new script. We were still travelling to Dublin once or twice a week. I had been trained to access his central line and take blood myself. A nerve racking procedure, inducing severe bouts of jelly legs and much dryness of my throat, but it's amazing what you're prepared to do to avoid another regular trip to Dublin!

This year, the weather failed to delight, but Rory manged to shine incandescently! While the sky was so thick with rain, it was literally hanging into the ditch, Rory sang his heart out and promised us all that once the rain stopped, we'd go to the playground. His joy at spending time with his family barely contained. Having stripped the sofa of all cushions, he and Jess bounced rolled, giggled and tumbled their way from Friday to Monday. Jess wisely remarked that; " you don't have to be cracked to live in our house; but it helps!"

A conversation through the comments of my last post made me realise, I have been doing it again; only posting about boy wonder when I have a complaint about the system. So today I'm taking a moment to revel in how far we've come on this most exciting of journeys.

I can't even begin to detail the progress of this last year there has been so much. So much, for which we are incapable of expressing the immensity of our gratitude. Maybe these few photos will give you a glimpse of the the Rogue's wondrous progress.

Cheers,

Ann

Moving from the land of the unwell

2009-04-25T13:49:00.011+01:00

Some eminent academic once described living with long term illness as 'migrating to the land of the unwell'. Very apt indeed. As a family, we've been residents of the land of the unwell for nearly 6 years now. It's a funny place, the land of the unwell, very isolated and with a very strange social order. Like any land, there are some amazing residents there, but there are also some who are not really what you would call good neighbours.

Making the transition from the land of the unwell is not that simple. For a start one has to be, in short, well. We're not totally well yet but we're not unwell either. We don't have a disability as such, but we do have some catching up to do. So that places us in limbo, somewhere between the land of the unwell and the land of the well. When you live in this limbo, bureaucracies don't quite know how to deal with you.

Take boy wonder for example, he's getting ready for mainstream school in September. This will not be possible without a Special Needs Assistant (SNA) and some intensive resource teaching hours. The SNA will not be an issue as he is incontinent and still doesn't eat, so it's a fairly straight forward medical requirement. The resource hours, on the other hand, are a bit more tricky. To qualify, he must have a permanent physical disability. We could say that as a result of a congenital defect, in his case, the absence of kidneys, he has a disability that is profound but hopefully not permanent.

However, I must supply proof. But there's a glitch. Due to a fundamental disagreement,I can't supply the very nice people in the NCSE (National Council For Special Education) with any of his reports from his Needs Assessment. The first problem is that his psychology report maintains that he has an IQ of less than 70. The reason, our learned friend, the Enable Ireland psychologist, came to this rather bizarre conclusion, is that most of the tests he carried out on Rory, related to food and eating. Having never eaten in his life, Rory simply refused to engage, ergo less than normal IQ. Brilliant.

So, I asked for a second opinion, almost a year ago now, as is my legal right under that bad joke that passes for legislation, the Disability Act 2005. In the meantime, as you may recall, I became involved in a battle with Enable Ireland over their lack of a child protection policy when screening staff.

Mysteriously my second opinion never materialises.

So now, in order to get my child the support he needs in school, I am dealing with a report that says mainstream school could never be an option for a boy with such a low IQ. Meanwhile my son is thriving in an Irish language preschool handling bilingualism with the kind of panache that only kids can display.

He doesn't have a diagnosis, just a suspicion by a muppet with a psychology degree but no common sense. He can't be assessed for ASD or any other form of intellectual disability because he is in Enable Ireland, they only do physical disability. Child and Adolescent Mental Health Services (CAHMS) won't touch him because of his psychology report. I can't access summer tuition for him because he doesn't have a diagnosis. I can't get a diagnosis because according to his psychology report, he is a human vegetable. Are you still with me?

I got thick last week and threatened legal action. I have just been informed that, I will have a second opinion within 10 weeks.

Should I call the removal van? Are we on our way?

Cheers,
Ann

Empty Nest

2009-04-18T20:07:00.004+01:00

I'd been trying really hard not to faff, in fact I'd been positively hands off chez Mme Robin. So bleeding hands of; that I missed the main event! I could kick myself - I should have known the shift from helicopter landlady to absentee was way too drastic, I should have just hovered discretely. You see, more than once over the last week, I had convinced myself that the whole Robin family had been wiped out by a smug cat, new to the neighbourhood. You know the kind, all knowing swagger and bling collars! I was forced to shoo him on many an occasion, as he was lurking far too close to Ms Robin's hood for my liking! So apologies to said smug cat - you may be innocent of this crime but this doesn't mean I have to like you!

Events reached a critical point yesterday afternoon, the chicks were very still - I had my macabre suspicions confirmed by other responsible grown ups. I even had phone counselling from my brother, who's pretty in the know with all things wildlifey. I was rehearsing the "sit down kids, I've got something to tell you..." speech. I was a bundle of stress. My neck was on the point of seizing up completely! Then, just as I was about to reach for the Neurofen, I decided on one last look. I was greeted by 4 beady eyes - the spit of their mother's, with that 'there she is faffing again' look. Oh the relief, I am now immune to Robin reproach, it was a joy to be belittled by them!

I went to bed with a light heart and an easy conscience, full of the promise of the wonderful photos I would take in the morning. So, bright and early today, sufficiently caffeinated and wearing my glasses, I went out with camera poised ready for the award winning shot. There they were, gone! They had upped and left without so much as thank you note. A bitter sweet departure, still it beats being eaten by that smug cat.

Thanks to the wonders of 'tinternet', I am happy to report that there is a much more observant robin room mate out there in cyberspace, and he has even recorded his robin's sojourn with day by day photos. All of which are revealed in technicolour here.

As for me, well, next time I will do better, I promise.

Cheers,
Ann

Reasons To Be Cheerful.....

2009-04-08T21:19:00.009+01:00

One,

Two,

Three,

Ok, so I'm no wildlife photographer, but you can still get the idea! Approx. 2 feet from my kitchen door, a robin, clearly showning enormous trust in us, (or with nerves of steel), has decided to make her home in ours! Watching her settle in without so much as an IKEA catalogue to help with the colour palette, has been an inspiration. The kids are enchanted.

The eggs hatched on Sunday, I have no idea when they may fly - Any advice? We feel a huge responsibility to this family; we really want to make sure they get the best start. It's all very lovely, but now I have another family's woes to keep me awake at night. How will she manage in this recession? Will her child benefit be taxed? What about health care? The right schools? It's going to get very crowded in there, will she have the means to trade up to a modest 3 bed semi? No sign of Mr Robin though - will she qualify for lone parents allowance? Do single mothers with 5 kids get mortgages nowadays? Where do robins go for this kind of advice? It's exhausting.

I try to share these concerns with her, sensitively broaching the subject, but she just gives me the look. The one that says; 'I'm in control, stop faffing'.

I'm taking lots of inspiration from this visiting family - they just seem to smile in the face of adversity. What an honour to share our home with such excellent house guests!

Cheers,
Ann

Organ Donor Awareness Week 28th March - 4th April

2009-03-31T18:41:00.008+01:00

Given the week that's in it, I thought it might be useful to look at the statistics behind the gift of an organ.

Last year 81 families in Ireland were visited by unspeakable grief with the loss of a loved one. When death came calling, in the throes of their pain, they thought of others; and agreed to organ donation.

Because of their ultimate gift, there are now 136 people leading happy healthy lives with new kidneys, 12 of them also received a pancreas, 58 are thriving with new livers, 4 are celebrating life with new hearts, and 4 are filling their new lungs with great gulps of fresh air. That makes over 202 people, who's lives were saved by 214 donated organs. A further 10 living donors courageously made the gift of a kidney to a family member or loved one. All told that's 212 families who were given a second chance.

I know all about second chances. Our second chance means that we no longer get up at 4.30 am every Monday, Wednesday and Friday to go to Dublin for Dialysis. Our second chance means that we can go on our first ever family holiday. Our second chance means our family doesn't have to be separated by frequent long hospital admissions. Our second chance means that Rory can pee!

While I know a lot about second chances, I also know about loss. On the 13th of July 1988 my sister was mowed down by a drunken driver. We would have liked to have donated her organs but she was killed on impact. It would have helped the chaos of my grief, if her death could have saved a life.

Please think about carrying a Donor Card, and if you do, please make your wishes known to your nearest and dearest.

Cheers,
Ann

Why Do I Bother

2009-03-24T22:02:00.007Z

I'm fit to be tied. Really close to blowing a gasket this time! I am now, reluctantly, with Rory attending Enable Ireland for Occupational Therapy. It may be now 'safe' but it is still very far from satisfactory!

So, I've made a series of appointments at 2 weekly intervals with the OT. She only works on Mondays and Tuesdays, and Rory's in school on those mornings, so we settle on mid afternoons on Tuesdays. Nothing much complicated there. What with all the to-ing and fro-ing to Dublin lately, we had to cancel our last appointment. This took some perseverance, if any of you out there have ever had the grave misfortune to require the services of Enable Ireland, you will be aware that making telephone contact with employees incarcerated in that institution, is very much a hit and miss affair. So not trusting the messaging system, I also, as a plan B contingency type measure, left a message on the therapist's mobile. This, I might add, was done under considerable stress, from Rory's bedside in Temple St.

I attended today as planned and checked in with receptionist. The receptionist failed to reach the OT by phone so we were told to wait. We took up our appointed waiting positions opposite the receptionist. Now, waiting with Rory is an art from. The required skill set lies somewhere between that of a mother superior and Coco the Clown. I manged to pull it off for a while but after 30 exhausting minutes, I asked the receptionist to try to phone the OT one more time.

He went in search, and came back soon after to tell me that she was out sick. I asked if it was not common practice to cancel appointments when someone is sick, he smiled and replied "I didn't know". I reminded him that we had already been waiting half an hour, he smiled and replied "I didn't know".There isn't enough cake and wine on the planet to sort out the rage in which I stormed out of that building. But mind you, the racy little Rioja I'm now nursing is dulling the edges of the throbbing pain.

But seriously folks, why do I bother?

Cheers,
Ann

Update: Wed 25th March
There was a very contrite phone call first thing this morning from Enable Ireland apologizing for yesterday's screw up. A secretary had been detailed to phone me and had forgotten. I still don't know why absences due to illness are not documented at reception. Maybe that's just far too sensible and just not the done thing in HSE funded institutions! I should also note that while I was there yesterday, I counted a total of 8 employees wandering around, Rory was the only client. Well equipped treatment rooms, and a brand spanking new hydrotherapy pool, were empty, like ghost towns. Where were the kids who desperately need this valuable therapy? They were all on a waiting list. Current average waiting time in the Galway area? 4 years.

Let Her Eat Cake Instead.

2009-03-15T10:49:00.007Z

It's been a long week. I'm tired. Bone tired. My body feels like it has done a few rounds with Mike Tyson. But, mostly my soul, spirit, essence whatever you want to call it, is exhausted. Exhausted in the way that you find yourself mid conversation with well meaning friends and you just want to give up. I don't mean that in a depressed way, I just mean that my story is beginning to to bore me. It's just so tedious, I'm either railing about the mess of our health service or raving about the wonderful kindness of healthcare workers. It's like living in the extreme swings of yin and yang. I can see people around me are bored now too, as their eyes glaze over when I try to explain the next round of bladder work needed for Rory's unorthodox plumbing. It's that, 'please, no more, I thought you were all sorted since the kidney' response that I don't know whether it makes me want to laugh or cry.

I can't bear another suggestion of 'why don't you write to your TD?' when I recount yet another injustice. Just for the record, I've been to, my TD (and some other people's ones also), the press, Mary Harney, Brendan Drumm, Patient Safety in the Dept. of Health, the Ombudsman for Children, the Health and Safety Authority, Mickey Mouse and Elvis Presley. So for, the results have been only neglible. I can already feel all those positive outlook new year's resolutions slipping, and it's only March. I don't want this life, not for me or my family. I don't want us to be defined by a medical condition. I'm sick listening to myself. I just want it to stop.

Fortunately, I'm not so brow beaten that I can't appreciate the glory of a house with two amazing, belly chuckling, throat tickling kids. There's hope for me yet! But, I really do have to work hard at not letting the system wind me up so much. It's incredibly difficult though, when you are your child's only advocate. His condition, forces us at times to make medical decisions which will affect his quality of life for years to come. It's a big responsibility.I don't feel in any way that we may have failed him, quite the contrary, it's just that continuing to ensure the best is utterly exhausting.

I'm taking myself in hand, for the next few days, fun is the only thing on the agenda. I want to laugh those laughs that come up from your toes. I want to walk on the beach with the wind blowing the cobwebs away. I want to drink wine and eat cake till it comes out my ears!

Any takers?

Cheers,
Ann

Does He Really Need To Go Tonight?

2009-03-09T22:29:00.006Z

It's been an eventful weekend. It started with a large vomit at 6.30 am on Fri. I had a feeling in me waters that, for Rory, this was going get worse before it got better. Me waters are rarely wrong. As the day progressed, the bug took hold. Phone calls back and forth to Temple St. ironed out a plan. The plan then changed hourly. Initially, I had some success giving saline fluids down his NG tube. But, as the afternoon rolled on, he was tolerating less and less and I was playing catch up with his fluid balance. If action wasn't taken quickly, we were looking at dehydration, which is never a good idea with a transplanted kidney.

We assessed the situation, weighed up the time it would take in Friday evening traffic to get to Temple St., versus the time it would take for Rory to get into difficulty. I/V fluids were required fast. With the team in Temple St., we made the decision to go to Galway hospital to get an i/v line started before transfer to Dublin.

The Paeds unit in Galway has been an invaluable support to us. The nursing staff there are second to none. They provide that wonderful combination of professionalism and humanity.So, I made all the arrangements, left Jess with her granny and auntie, then made a run for it.We were met at the door, they had liaised with our consultant in Dublin and a bed was waiting.So we checked in, and watched helplessly as this group of highly trained professionals had to wait for registrars to arrive from various other wards in the hospital to put a cannula into Rory's arm. It was not a pleasant wait.

Now, I feel that the 5 years I've just put in, allows me to speak with some authority on how to get blood from children. There is no nice way to do it. The kindest thing you can do for a child is be swift. Lessen the stress by having all you need prepared in advance, and don't let the child see the paraphernalia until you are ready to stick the needle in, draw the blood, and then get the hell out of the room. Putting a tourniquet on their arm and then realising you're missing a vital piece of kit is not an option. We didn't manage to get i/v access to Rory as the Registrar had to cover many other wards in the hospital and Rory was not an easy case. The consultant in Dublin called a halt and asked for Rory to be transferred immediately without delay by ambulance to Temple St.

So acting on consultant's orders, the highly trained wonderful nursing staff phoned ambulance control in Castlebar at 10.00pm. The call was greeted with annoyance, as the controller impatiently asked 'Does the child have to go tonight?' OK, now here's where I loose the plot. Where exactly, did that ambulance control phone operator do their training in paediatric nephrology? When did their job of delivering ambulances requested by consultants, morph into a second guessing of those same consultants? The Paeds nurse, fair play to her, remained calm in the face of such insanity and politely answered yes, he did indeed need to go tonight. It was 10pm on a Fri night - what did they think, I was on my way to some designer shoe sale? Piqued by the answer, our friend the consultant nephrologist ambulance controller, then inquired if the patient had private health insurance!

That's when I put a stop to the conversation, I was in no mood to be insulted any further by another HSE Muppet. We called a taxi and, with a pump very kindly on loan from those wonderful nurses, I managed to continue to pump i/v fluids into my son's NG tube arriving in Temple st at 1.30am.

It's not enough that I have to worry about my son's health, but I also now have to defend his use of the health service. I am no longer shocked when I see that patient respect is non existent, I've been desensitized so much over the last 5 years. However, I was shocked to see the complete erosion of respect for the professionalism of health care workers. Paediatric nurses are highly trained busy professionals, they are overworked and often abused by the public. They now have to take abuse from Muppets at the end of a phone who are abusing their power.

I don't know about you, but I've just about had enough.

Anyone seen my tooth?

2009-03-02T19:57:00.006Z

It's a blurry picture, I know, but it was not so much a moving target as a speeding one. But wow, what big news Rory lost his first tooth yesterday! And believe me, I do mean lost in both senses of the word. We have scoured the house and it's not to be found. The current consensus is that he must have swallowed it. Before you leap in, no, the irony is not lost on me. He won't use his teeth to eat anything, yet chooses instead, to eat his teeth. Well at least, we can add that to the list of single items consumed, it's a short list, so far featuring only a single Rice Krispie and a front tooth.

Of course the whereabouts of this tooth does pose a new dilemma. If indeed it was swallowed, would the tooth fairy mind if we, you know, waited for it to, well, put delicately, exit again? Obviously, we would clean it up before leaving it out for collection. Anyone know what usually happens in situations such as this? However, strictly 'entre nous', from the state of his nappies, if I were the tooth fairy, I'd happily accept an I.O.U.

Cheers,
Ann

Once more into the Breach!

2009-02-24T20:51:00.006Z

With the change of guard now official since Feb. 1st, it was now deemed safe for us to return to Enable Ireland, for the first time since last summer. That old fire breathing dragon was no longer stalking the gate. Mind you, I still can't be 100% sure that the Children First child protection guidelines are now back on the menu, but that's an improvement on being 100% sure that they were off, as was the case during the former dragon's tenure! Nobody warns you of these ethical dilemmas when you venture forth into the great grey unknown of Irish disability services. You see, for the last six months, Rory hasn't been able to access Occupational Therapy, Physiotherapy or Psychology services. They were on offer alright, but I couldn't guarantee his safety where they were on offer. My Hobson's choice was to a. send my son for treatment to an organisation, where the management were ignoring national child protection guidelines, or b. not send him for therapy at all.

So, operating on the maxim that has stood me in good stead up to now, I chose the latter, as I reasoned that no therapy was better that bad therapy. Luckily for us we were able to work with Rory at home and he continues to make progress. Of course, we'd have made much more substantial progress with the help of qualified therapists but, such is the joy of the Irish system! The outcome for the child is never a priority. Enable Ireland, yes another great mind numbingly, moronic moniker of the HSE variety. Who exactly are they enabling? My contact with them has left me decidedly disabled, mentally and emotionally.

The more encounters I have with the system, the more I feel like poor old Inspector Clouseau, as some other branch of the HSE leaps, Kato like, from a wardrobe in an attempt to flatten me. I wonder if there's some ancient Asian martial art that can protect you against brainless bureaucracies? A kind of queue jumping Judo or a report busting Karate? A Kung Fu for form fillers? I could train as a HSE Mandarin mangling master! I could get a black belt in bureaucrat banjaxing! I think I could be on to something here!

.....Or maybe, it's just that this time, I really have lost it.

Cheers,
Ann

Is This A Sign?

2009-02-11T16:40:00.005Z

I've just been sent an application for E112 funding - this is for treatment outside the state. It seems we're being referred to a feeding clinic in London. I say it seems, as, since I don't officially have a copy of the paediatrician's report, I can only assume that's what is in fact, happening. Should I be hopeful? Cynical? Joyful? Impressed? Relieved? Bored? You see, without all the information, I find it difficult to come up with the appropriate reaction.

So, I did as I was asked, filled out the form and sent it back. I suppose now I wait. I wonder if they'll contact me when or if we are to go to London? Maybe they'll tell everyone else on the team and hopefully the news would filter through to us eventually. But then again, if they haven't told us already, would we really need to go? Maybe the doctors could just, I don't know, talk to each other and well, just ignore us, we're probably only in the way.

But, should I pack a bag, just in case?

Cheers,
Ann

Steps Forward and Backward

2009-02-08T16:41:00.008Z

Well some of my January list of battles have been well dented this week! Who'd of thought we'd see results so fast? Of course in typical Irish fashion, what the HSE giveth with one hand, it taketh away with the other!

Ok lets start with the goodish news:

Low and behold, didn't we get another pair of shoes! In this climate, I am rating that as a personal coup. Rory's very pleased with the noise they make. Could this mean that HSE policy is now to actually finish orthotic treatment once it's started? Surely not? Such common sense and foresight would be tantamount to treason in this economic winter of discontent. Well, for whatever collective rush of blood to the head that resulted in this podiatristric (is that a word?) bounty, we are truly grateful!

There are also unconfirmed reports of a Paediatrician's letter floating around in the ether. Seemingly, it has been sent to a number of people connected with Rory's case, GP's, Speech Therapists, Nephprologists and the like. However, it was not deemed appropriate for the eyes of his parents. Proper order too, I say, you couldn't be giving the patient their own notes. What would we know about the situation? We're only his parents and the former owner of his new kidney. I do hope it proves helpful, this report, but mostly, I hope it says nice things about us. Maybe this is another record, we met the Paediatrician on Nov 20th and the report goes out in Feb., what's that? A little over 8 weeks? Good job his global developmental delay isn't fatal! Mind you, I think my own development is going into decline a this stage!

Now here's the 'taketh away' bit. Community Don't Care has cut back our nursing cover for Rory by 70%. So we can kiss goodbye to 70% of our current short sleep supply 'till he learns to eat and pee on his own. This particular blow was delivered on Christmas Eve, nice touch eh? We appealed, naturally, but got the big fat NO on Fri.

Not to be outdone, by Community Don't Care, the Ambulance Service has cut our transport to clinics in Temple St. I now have to work out how to drive while emptying a urine bag in the back seat. Anyone out there with any experience of the gymnastics required for this? Please get in touch, I'm going to need some tips. The logic behind this decision being, that transport stops 6 months post transplant, and fair dues we are now over a year out. A very fine rule this is too, if you are an adult and you can go to your local nephology service. We've no one to blame but ourselves you know. On reflection, it may have been ill advised to have a chronically ill child while residing outside the greater Dublin area, what were we thinking? Be warned any of you out there who may be considering a similar lifestyle choice! But rules is rules and Rory has broken way too many in his short life and the powers that be are getting a tad tetchy. He defied them all by surviving, now it's payback time! As our friend in Community Don't Care likes to remind us, he has clocked up quite a bill with the state already.

I wonder if they'd give us a credit note for the kidney?

Cheers,
Ann

Hope Springs Eternal

2009-02-05T16:02:00.009Z

I'm back, refreshed and ready for action. I've been reflecting a lot on our situation, it's been really good to have time to process the last 5 years. Much of it has been quite un-processable! So those were the bits I parked and filed under ' to be attended to at some undetermined time in the future'. As the old saying goes ' no problem is too big that it can't be run away from'.

It's funny how reflection happens in snippets, events drift in and out of your mind, often triggered by seemingly unrelated events. The historic inauguration of President Obama, and the appearance of the first Daffodils has me pondering on the nature of hope. It's a word we bandy about with such ease, we roll it off our tongues without too much thought. I remember times when Rory was very sick people would often say - where there's life, there's hope. I never understood them, at times I even wondered if they themselves understood what they were saying. Even if they didn't, hearing the sincerity of their concern for our family, felt like a lull in the storm.

Hope's a funny one though, it's not always easy to maintain. I look on hope as a gift - not unlike that of religious faith (a gift, I personally have never received). This is not just a passive gift, it can't just be passed on without being continuously nurtured. Like the dying embers of a fire, hope is fragile and has to be stoked continuously. It takes courage, energy, tenacity and, lets be frank, a certain insanity to keep it going. Although blessed with a fundamentally optimistic disposition, I frequently struggle to maintain hope. But then, here's the another thing about hope, it can be lost and then found again without recrimination. When energy lags and the embers struggle to glow, the flame can go dormant, then when you least expect it, some whisper of wind from left field, will tickle life back into to smouldering ashes. When hope is passed between us, we have a responsibility to package it well, like fine bone china, it needs to be handled with care. The receipt of it is also a big responsibility, as hope like fine china, once broken, doesn't stick back together again without leaving a scar.

As the combination of expectation and desire, our ability to hope is often tied up with our sense of self worth. Hope needs the nutrients of self esteem to survive. Obama's message of equality and righting of old wrongs is hugely powerful, as he is the visual embodiment of that hope fulfilled. Daffodils are the proof that light comes again each year after the dark winter. Lets face it, if we loose hope what have we left? This is all very philosophical, I hear you say, but where is it leading? The short answer is, I don't know, but I just felt I had to give you some insight into my current state of mind. My hope is still alive but it 's currently on life support.

On Monday, I got a letter from Enable Ireland. The woman who knowingly allowed my son to be referred to a dangerous speech and language therapist, has been promoted. After all the complaints, the findings, the tears and the downright terror, she has been rewarded for her negligence, reckless endangerment and lack of due diligence. It is very hard for me to hope that Enable Ireland will ever be able to provide for my son's needs. It is very hard for me to hope that my son's needs will be met in this country.

So, I've been thinking, maybe I've been placing my valuable, hard earned hope in the wrong place. My hope is now going to reside with people who are capable of nurturing it, not inhumane institutions who have no concept of the fragility of hope.

I'm already looking on the bright side, at least that bat has left and I don't have to deal with her anymore. Would it be audacious of me to hope that her successor is more humane?

No, that would be just plain irresponsible.

Cheers,
Ann

Taking Stock

2009-01-12T19:12:00.006Z

I'm taking a little rest for the next two weeks, so may not be blogging for the duration. I am going to clear my head, draw the battle lines and carefully choose my campaigns.

My draft list of on going skirmishes is as follows:

Remember that nice paediatrician we saw in November? Well, it turns out, I was right not to get my hopes up, even after follow up phone calls from my good self, we have heard exactly; zip, nada, nothing. That second opinion on the psychology assessment? Nothing. That referral to the feeding clinic in London? Zilch.

The old thorny issue of the orthotic shoes has reared its ugly head again, Rory, the irresponsible thug, has only gone and grown out of the last pair! The cheek of him. We've been measured for a new pair, and assured that we need them, but the approval ? A big fat nothing, we wait.

We made many official complaints about the fact that Enable Ireland, in knowingly referring our son to a dangerous speech therapist, were in breach of Children First national child protection guidelines. This resulted in a lengthy HSE report, which stated that there were serious questions to be answered by Enable Ireland. Silence drifts off the now, dusty report. We were advised to get a good legal team behind us, as the serried ranks of safety net quangos, set up to investigate, are completely impotent. Any one for a spot of public sector cuts here?

A TD raised a question in the Dail on our behalf. What did we get? A letter from my old friend - (the 'do you know how much you son has cost us?' manager from Community Don't Care) listing just how much therapy Rory's getting. No word on child protection guidelines or Enable Ireland's conduct though.

We returned to the Ombudsman for Children on the whole sorry affair. We were met with a polite, please form an orderly queue, response from an overloaded case worker.

We have refused to darken the door of Enable Ireland until we get some answers, we have no confidence in their vetting procedure for hiring staff. As a result, we can't access services as Rory's case cannot be transferred to community services, without first going through an internal inquiry in Enable Ireland - Frankly, after what we've seen of that excuse for an organisation, I'd rather stick hot needles in my eyes. We get regular letters expressing concern for Rory's best interests from the Director of Services, a misnomer if ever there was one, she doesn't direct and we haven't seen any services! She must type them while oiling the lock on the stable door as the horse runs down the driveway! She even threatened to withdraw his special needs assistant from pre-school if we didn't behave. Yawn.

We have to wind ourselves up for major surgery this summer, it will happen in the UK as the expertise is not available in Ireland. I have no problem with this, but it will, however, demand a certain amount of logistical planning on our part. I need energy for that. I don't want to waste my time playing administrative ping pong with Mary Harney and her merry band of HSE muppets.

I am starting this year on a positive note, I'm still buoyed up by our first ever healthy family Christmas. I refuse to be drawn into meaningless paper chases with idiots. Tempted though I am, to launch in, all guns blazing, it's a long year ahead and I have had 5 long years behind me.

So in the interest of sticking to my fresh new year's resolutions, I'm changing the way I react and I'm taking a break. I hope to return renewed, refreshed, recycled and recharged. I will be busy smelling the roses and hoping like hell, I don't revert, regress and react!

Yours in peace and harmony.....
Cheers
Ann

Good Riddance to 2008!

2009-01-09T15:18:00.004Z

Well, we made it! Can you believe it? A whole 12 days of Christmas without a single visit to a hospital our first since 2002! I have to admit, I was nervous for a while there, I didn't think we'd pull it off, but we did! Admittedly, by the hair of our chinny chin chins, but lets not quibble. Christmas week was spent on cough watch, this was a real hum dinger, so harsh, it involved vomiting and occasional expulsion of the NG tube (not pleasant!). I was a nervous wreck and pulled out my shock and awe weapons from my well stocked medical arsenal. I pelted it with steroids and nebulizers those bugs didn't stand a chance. Attila The Mum was on duty!Peace and harmony was restored by Dec 23rd, then the bugs re-grouped and launched a counter attack on Attila herself on the 26th! We're still slugging it out two weeks later.

But what a joy, coughing and spluttering not withstanding, we lounged in front of the telly, squabbled over the Quality Streets and moved the official time of wine o'clock to a seasonally early hour, sometimes even before dark! Oh the decadence! Santa impressed, Peppa Pig's house arrived to the delight of our youngest unbeliever, who has now has a Road to Damascus type conversion on the Santa front. He also dazzled Jess, who is now more sure than ever of his bona fides. It brought a tear to this old cynic's eye, I can tell you.

And so to a new year. I have to admit that I could not wait to usher 2008 out the door, like an unwanted guest or last week's fish it had left a very bad smell in my consciousness. After some reflection, I can trace the start of my exhaustion, confusion and heartache to the 15th of Jan last year. The date of the infamous "Oh you'd have to go to Australia to see her" conversation with a senior staff member of Enable Ireland. It went downhill from there. We haven't reached the bottom of that dip yet, I'm still not convinced that we will get any satisfaction without legal action. For obvious energy conservation reasons I am reluctant to take that route.

And that leads me on to this year's resolutions: Apart from the obvious, lose weight, get fit, see more of my friends, shout less at my kids, promote world peace and win the lotto, I'm trying to set realistic goals. This is purely for self preservation, as I couldn't stand the crush of not keeping them again this year. So here goes;

* Get a new bladder for boy wonder - surgery is scheduled for next summer

* Eat a meal with boy wonder - ( he told me his resolution was to learn to eat with his mouth)

* Try not to get as upset by the threats and general bullying from the HSE et al bearing in mind that they will never change, so to survive, I have to change the way I react to them. Please feel free to remind me of this if I start to whinge and rant!

*Do something for myself, maybe return to education.

Do, please, keep score and remind me of the ones which are in my power to achieve.
God grant me the power to make resolutions I can achieve,
The patience to say, hell, it's not worth it, to the ones I can't
And the wisdom to know the difference

A very happy new year to you all, and please stay with us for another while, we're still in need of your continued support. You have no idea how much it has sustained us through the war.

Cheers,
Ann

Santa's a Hit

2008-12-10T20:17:00.005Z

What can I say? We had our first ever visit to Santa. It went remarkably smoothly, no one lost an eye, all elves' limbs remain intact. Rory answered all the questions put to him by the man in the red suit, made his formal Christmas demands, he didn't trash the grotto and his big sister didn't have to slope off and pretend not to be with us. Now that's what I call a transplant dividend! Although he was just a touch deflated by the low spec gift, as it was clearly not as per his aforementioned request. We're still working on the whole, 'you have to wait 'till Christmas' lark with him. He's not buying it but hedging his bets and not protesting too much. Little angels, you gotta love 'em.

Cheers,
Ann

Remaining Camh

2008-12-03T19:51:00.007Z

We met a really nice Paediatrician last week. She has a special interest in developmental delay. Naturally, Rory charmed her instantly. After patiently listening to his encyclopedic medical history, she asked us why he wasn't under the care of CAMHS (Child and Adolescent Mental Health Services). She was too polite to suggest the equivalent grown up agency for his mother! I drew in a deep breath, became the very embodiment of the word CAMH. I visualized all those CAMHS referral letters floating off into a balmy spring breeze in an effort to steady myself before I answered. (It's my new tactic to try to minimize wear and tear on my hip, when I shoot from it!)

I looked her square in the eye and told her that according to his psychologist, he has an IQ on a par with that of a slightly under done Brussels Sprout, and therefore, officially intellectually disabled, thus putting him beyond the remit of CAMHS. Meanwhile Rory was camhly wading his way through her wallet and correctly identifying all of her credit cards! Sensible woman that she was, she replied, even more camhly, and without flinching, 'we might get a second opinion'. I was impressed, cool, camh, collected and talking sense where had they been hiding her all these years?

Could this be progress? Must not get excited, must stay camh, must stay camh.........

Cheers,
Ann

Wonder

2008-11-28T13:06:00.005Z

Hi All,

I've just had one of those weeks. I really think I'm are in dire need of a day care centre for those with 'memory challenges'? Oh it's been a beaut! To the extent that the other kidney has taken to sending me texts which read " Hello my name is Niall, I am your husband do you remember me?". Pin numbers? How are ya! I'm having difficulty with my address and phone number these days - only for the computer knows my password to log on, I may have vanished permanently from the blogosphere.

It has just occurred to me that my internal hard drive, mother board, gigabyte thingamajig might need an upgrade, overhaul or indeed a complete replacement! My brain is uber crammed with appointments, letters of complaint, overdue thank you cards, lunch box ingredients and plans to defrost the freezer. I think this week it just went on strike. While I couldn't blame it, I was, however, deeply disturbed that since dinner still had to be produced, my body couldn't go out in sympathy with my brain. I've been nurturing fantasies of just stopping, not any dramatic meltdown, high drama, I just can't take it anymore strops. Just a nice simple easy grind to a halt. I'm indulging in those day dreams, the ones where where you're by the pool, trailing your left big toe along the water's edge, while sipping one of those fruity cocktails and managing to keep the paper umbrella out of your eye? Ah yes, a 2 week break filled with sun loungers and trashy novels while your brain waits patiently at Dublin airport for your return. Sadly I get rocked back to November in the west, with horizontal rain fall, inside out umbrellas and smelly nappies!

It's funny though, when you do check out for a while - things seem in sharper focus when you jolt back. Today, I realised to my immeasurable joy, that Rory knows all the words and steps to the Hokey Cokey. He can do all the actions for Head Shoulders Knees and Toes. He now understands the concept of 'finished'. He asks to have his face massaged. He no longer looses the plot when he has his toe nails cut. He will put Pringles to his lips. He will sit at the table during dinner. When I ask him "who's the best man in Ireland?', he'll giggle and shout " it's me Rory Barrett".

Sometimes you have to leave the planet to appreciate the glory of where you are.

Cheers,
Ann

Defending The Indefensible.

2008-11-19T20:21:00.006Z

Hi All,

I thought I'd better give you the next installment of our sinister saga of the search for services! I've had 3 months to digest this latest flash point. That digestion has been far from easy. I have lost countless nights' sleep, sobbed into cups of tea, glasses of wine and the shoulders of family and friends. The whole experience marks a new low in our struggles for Rory's care, and you all know, we have already scraped the bottom on more the one occasion.

Since his dramatic arrival, 5 weeks early in Aug 03, we have had the honour of being surrounded by some of the best medical care known to mankind. Our lives have been touched by some of the kindest, most humane professionals I have ever had the privilege to encounter. They have sat with us, all day when necessary, they have been on call 24/7, they have worried with us,informed and instructed us, but most of all, they have empathised. When life throws you the enormous challenge of a chronically ill child, the dice can roll any number of ways. We came out with some pretty good odds. Against us, was the fact that nobody had ever seen a case like Rory's before, but in our favour, this made the team all the more committed to a successful outcome. Before 2003, very few kids born in Ireland were successfully dialysed from birth. In view of this amazing miracle, you could be forgiven for thinking that every possible early intervention strategy would be thrown at this case to maximize the positive outcome.

Even with my 5 years of bitter experience of the basket case that is early childhood intervention in the West of Ireland, I will never be able to fathom why it is so appallingly bad.

Anyway, I digress from the story at hand, I just had to vent that yet again, excuse the indulgence; but I really do believe that it bears repeating.

OK, so bearing in mind the quality of care and professionalism we had as our benchmark, I immediately assumed that the employment of an unlicensed, threat to public safety, as a speech and language therapist, must have been a huge mistake. Management would be suitably horrified when they found out, surely. Mind you, I was not thrilled about the fact that I was going to be the bearer of bad news, what with my previous experience of messengers and shootings! I pondered long and hard on the most appropriate way to inform Enable Ireland management. I figured an elected public representative would be the best person for the job. He would be objective, yet have sufficient gravitas for people to at least, take his phone calls, he would also be in possession of a rudimentary working knowledge of the legislation governing this type of situation. My local TD did not disappoint on two of the above; objectivity and knowledge. However, it seems he didn't warrant a return phone call. After two days, he gave up and rang head office in Dublin. Their reply was curt, and to the point. They knew about her license irregularities, it seems another parent had expressed concerns 4 weeks earlier! Meanwhile she was still in full time employment, paid for by you and me.

Hello people! Anyone out there on planet HSE listening? You were employing a "threat to public safety" to work with vulnerable children and none of you Einsteins thought it might be appropriate to suspend her pending a full investigation? Lets not forget, ladies and gentlemen, that this woman was still in the probationary period of her employment contract, so there were no legal impediments to suspending her. To say I flipped at this news would be the understatement of the century!

Like my local TD, it seems that I was also on their "Don't Call Back" list. The local services manager took a week to return my urgent calls. Annual leave being cited as the excuse, but none of her minions manged to communicate that little nugget of information during the preceding week. When she finally deemed it appropriate to address my concerns, her explanation fell rather short of what I would have expected from a public servant of her grade. According to current wisdom within Enable Ireland, cases of fraud, falsification of qualifications and being deemed a threat to public safety, do not constitute a loss of clinical competency. In other words, the local management team decided not to suspend her because, even though she had no license to practice, her clinical competency was not in question.I would love to have been a fly on the wall at that meeting, listening to the defense of the indefensible. If anyone could translate that into acceptable logic, I would be very grateful. Because at the moment I am at a loss.

Where do you go when the people in charge play by a completely code of moral conduct to the rest of the civilized world?

How can you claim to care for vulnerable children when you knowingly refer them to a therapist who has been deemed a threat to public safety? I had naively thought we had cleared that kind of rot out of this country, when we closed the industrial schools. Is it just me ? Am I being too demanding here?

Advice would be welcome.

Cheers,
Ann

From the Sublime to the Downright Dangerous!

2008-11-14T15:14:00.007Z

Hi All,

Well; the auspicious first anniversary has passed and we're all still talking to each other - a major achievement. Corks were popped, gifts and best wishes were gratefully received and big thick wedges of chocolate cake were consumed! A fine day was had by all. Thanks to all you new readers who have just logged on, your comments and visits have given us a much needed boost at a time when our energy was beginning to flag.

It was very therapeutic to be back in Temple St yesterday. The welcome was as warm as always but there was also a palpable sense of shared joy in Rory's progress. It must be so heart breaking for the many dedicated teams that staff our hospitals to have to preform precision work with only the brutally blunt instrument, that is the HSE management attitude, to guide them. I am constantly impressed at how they keep their souls and hearts in tact in the face of dangerous ineptitude. They are the true embodiment of grace under fire. As the other kidney put it so eloquently recently, - he remarked on how he had met countless Wayne Rooney's working in the health system over the last 5 years, but he has yet to meet an Alex Ferguson.
I think that about sums it up really.

That brings us nicely to our current impasse with Enable Ireland. An institution badly in need of a Ferguson style make over (I could name quite a few in there who could benefit from a footie boot being hurled at them)! Again the trauma of what we have endured at the hands of this organization has left me completely speechless, directionless and utterly devoid of hope. Let me try to put this into some kind of digestible narrative for you - again this story carries a health warning - for those of you who are squeamish about children's rights, log off now as this gets really nasty!

Way back in July, our HSE community speech therapist - (who had been doing some very fine work with our little lad), informed me that Enable had finally employed a speech therapist and since all our other services (occupational therapy, physiotherapy and psychology) were allegedly being delivered there, she felt that it would make sense to make the switch to their latest recruit. I have to admit I was uneasy about changing lanes again but I could see the sense in it, all the advice to date indicated that Rory should be seen by a multidisciplinary team. So files were passed, emails sent and calls were made.

I got to speak to this woman in mid July. Now here's where it starts to get decidedly murky. She was quite a force on the phone, as, although she had never actually seen my son, she seemed to be utterly convinced that he needed a very specific test called a cinefluor graphic study. She tut tutted dismissively when I told her I had never even heard of this, and remarked that this was just typical of this country, we were years behind, and she, being a highly qualified American who came from a long line of medical practitioners was clearly the only one who could sort this out. I would have to leave the country if necessary to have this done, and she even hinted that I had indeed been negligent of my son in not having insisted on this sooner. She assured me that if it were her own child or one of her nieces or nephews she would be causing a stink until this test was complete.When she wound down from her rant, I got her to translate the test into our archaic plain Hiberno-English. She was talking about a swallow test.

OK, now I could continue the conversation, we had sooo been here before. I explained that this had already been performed and that there was nothing wrong with Rory's swallow. This cut no sway with our rootin' tootin' yank friend. What the hell would they have known in Crumlin hospital? Anything could have happened since? There was nothing else for it but I had really better get my finger out and find myself a swallow tester stat! She then launched into a vitriolic invective about Enable Ireland and what a shambolic mess they were, particularly the management team. Now, while I had no problem with what she was saying, I did have a problem with the fact that she was saying it to me. I was, after all, her client, and she was, after all, an employee of that renowned organization. There was also that very distant niggling doubt in my mind that if she was a good as she proclaimed, what the hell was she doing working with what she considered to be a two bit operation?

So I managed to extricate myself from the, by now, extremely lengthy conversation by claiming the urgency of an impending school run! I came off the phone with a red ear and a really throbbing brain. Had I really been negligent? Was Rory's oral aversion really all my fault? How could I have not seen this before? Thankfully this self doubt, although profound, was short lived. I emailed the American specialist we had seen in Dublin in May. She confirmed my suspicions and advised against the test. Not only was it very dangerous -(it involves swallowing a large cup of glug called Barium) but it would have been extremely invasive for Rory and could have set us back years in terms of the trust we had built up in him allowing us near is mouth.

This got me very worried, something was very amiss. To satisfy my concerns I Googled the woman, she had an unusual surname so I figured she should be easy to track down. Nothing could have prepared me for what came next. Do remember, that I am very battle hardened but, even a veteran like me has their limits. There it was, a mere 19 seconds later, in black and white, flashing before me on my computer screen - this woman had been struck off in California! I was looking at a petition to renew a surrendered license to practice. Surely there was a mistake, this couldn't be happening - you assume there are vetting procedures in place. To be absolutely sure, I rang the the Californian Speech -Language Pathology and Audiology Board, they confirmed that her petition to have her license renewed was denied, and that as far as they were concerned she no longer had permission to call herself a speech therapist under Californian law. They wouldn't give me any other details over the phone but very kindly faxed through the judgement in her case.

Yet again I was floored, as the fax snaked it's way though my home, (I'm still working with a trusty but prehistoric thermal paper one), reading the pages upside down, words like fraud, falsely using the initials Ph.D after her name, left me reeling. Then it came the final killer sentence that has haunted me ever since....

"The Board remains concerned that if the petitioner were reinstated, the public's safety would be in jeopardy."

So there you have it folks, Enable Ireland had given a full time job, paid for by our tax payers' money to someone who was considered to be a threat to public safety in California. Doesn't that make you feel really secure about where kids with special needs get treatment in this country?

I'll let you all digest that little nugget before I catalogue the appalling reaction we got from Enable Ireland.

Cheers,
Ann

An Anniversary to celebrate with Pride

2008-11-10T10:03:00.008Z

Hi All,

I must yet again beg your pardon for being such a foul weather blogger - (that's of course, as opposed to being a fair weather friend!)the compulsion to vent on line seems to only strike when I've got bad news. I have resolved to reverse this rather worrying character flaw of mine, and cast my eyes firmly on the sunny side! In the darker days of dialysis I once remarked that I had sustained retina damage from looking on that same sunny side. So that's probably where the last few months of dark blogs came from, a big black sun damage smudge on my retina! Typically, I choose mid winter for my return to sun gazing, as ever I veer towards the triumph of optimism over experience! Will I ever get sense?

I started this bizarre public diary a year ago this week, initially with the purpose of keeping friends and family informed of Rory and Niall's progress as they planned to share a vital organ, in this case a left kidney to be exact. It's very surreal to now realize that on Thurs 13th of November, our son will have been housing his father's left kidney for a whole glorious 12 months. And yes, he is still peeing like a race horse, Rory that is, although now that I think of it, I haven't heard any complaints in that department, from his Dad either.

What a year it has been! I've been trying to reflect in some sort of meaningful way on the last 12 months but all that keeps popping into my addled brain is a searing sense of relief, in the almost 'get out of jail card' sense of the word. It is the primal relief of one who has survived potential catastrophe and can only really truly be expressed by the following phrase : Thank **** it's no longer November 2007!!

Highlights of the last year are many and can all be found in the 'marvel of the mundane' category.Primary among them, must be Rory's first Pee, which has to be one of the most thrilling moments of my life. When your world has been measured out in millilitres of restricted fluid for over 4 years, the sheer joy of watching fluid pour out of a little body for the first time is impossible to describe. This is a boy who could only take 450 ml in 24 hours (and only 400 at week ends), think about it, that's about 4 cups of tea. Now we have a positively cavalier approach to fluid, we're of the get it down ya school of thought in this house - 1500 ml a day and climbing!

And signs by, he's really piling on those kilos. B.K. (otherwise know as Before Kidney chez Barrett) each kilo took at least 12 months to acquire, and boy did we obsess about it. Rory had to be weighed every day sometimes twice a day, to assess his fluid intake - too much and his blood pressure would shoot up, too little and he would be dehydrated. The golden number was always 10kg - the weight he had to achieve to be considered for a transplant. Last year after a year on the list waiting for a kidney, he went into the operation weighing a cool 11kg, last week, he weighed in a 16.5kg, complete with a pot belly and love handles. What a difference a kidney makes.

The battles of the last year were unrelenting and very bloody and we are far from finished with the fight. I don't need to remind you of them, you've walked in my shoes and raged against the HSE horror machine with me. But lets put them aside for this week, it's fitting in this month of November to declare a temporary Armistice. Hostilities will be suspended to enable us to celebrate our achievements in style. So join with us in raising a glass, a prayer, a hope, a light or whatever your heart desires, to the skill and the humanity of that amazing bunch of people in Beaumont and Temple street hospitals who saved our son's life. To that very bunch of people I say, take a bow and bask in warm glow of pride in your excellence.

Let us never forget that goodness exists and miracles do happen.

Cheers,
Ann

The Last Straw

2008-08-09T08:40:00.004+01:00

Hi All,

I've been trying to compose this post for a very long time, mulling it over, worrying about going public. We have been brutalised so much by the system that we seem to have become de-sensitized to all the wrongs that are being committed. Sometimes it seems like we're completely out of step with the rest of the world, when we complain, people look at us like we are aliens and give us the "that's just the way it is" speech. This last week has been a new low which I haven't even digested enough yet to write about. I don't quite know where to start on this so bear with me yet again if I am rambling, as I feel like I have just wandered dazed and confused with a still bleeding head injury from a train wreck .

I'll have to go back as far as last March to give you the full picture, I am ashamed to admit that at the time, I was afraid to mention this particular incident as I feared going public would some how impact badly on Rory's care. At that stage, we still hadn't got our service statement or any confirmation of access to services. During the whole fiasco over the missing Enable Ireland Speech Therapist and the scramble to find another to assess Rory under the statutory time frame, I emailed his royal highness Prof Brendan Drum, CEO of the Health Services Executive. In his former incarnation as a lowly paediatric consultant he had reason to see our boy wonder when he was in Crumlin Hospital. (Another period best forgotten, trust me!)

My email, was succinct, I curbed my normal ramblings, I respectfully reminded him of his review of our son's condition in 2004, mentioned all his former colleagues who had treated Rory so skillfully and I asked him why all this expensive treatment was now being put at risk by the lack of Speech Therapy services in the west. I pressed send and waited for a reply, I waited and I am still waiting. Call me old fashioned, but now, a full 5 months hence, I would be inclined to describe the lack of even an acknowledgement, a tad rude. However, out of the blue, in mid April, what can only be described as an incendiary device landed in my in box. And this is where it gets really nasty, you may want to pause for refreshment or fortification before you read any further.

Contaminating my email account, I found a missive so full of spite and veiled threats, that I was left reeling for days. Even now as I type, I can feel my heart rate increase. A local manager, who is charged with overseeing services of the caring profession to the weakest and most vulnerable in our community, saw fit to write in response to us having the temerity to contact Our Lord The Most High Brendan Drum. She reminded us of how she was well aware of our son, and proceeded to detail exactly how much our son had cost her over the years we spent on jolly jaunts to Dublin 3 days a week for dialysis. We were given the breakdown of nursing care, the enormous cost, and most importantly, lest we forget, the fact that all of this was in the form of a 'grant'. Yes readers, a grant, not a right to travel to Dublin for life saving treatment, folks this was a grant, that was within her gift to bestow or take away. We had displeased this all powerful manager by going to her boss with an insolent inquiry about a minor issue like Speech Therapy. We had made her look less than all seeing all knowing among the big chiefs in Dublin, so we must be punished. We must be reminded of who is in charge here, we must be reminded of the 'grant' nature of our support services and in these less prosperous times, this most beneficial bestowal may dry up! There then followed the usual detailed list of the standard chain of letters and reports about that expensive upstart, our son, . Like every one else on the list, we would get speech therapy when they were good and ready to provide it. Who did we think we were with our tales of kidney rejection thinking we could jump the queue?

So let us remember here folks, that our children with special needs, medical, physical or intellectual, who live outside the greater Dublin metropolitan area, are not entitled to support when they have to leave their communities for treatment. They may, if their parents doff their caps and speak very nicely to those very important local managers, be granted little gifts from time to time but otherwise they can just go and whistle for it!

I have to admit, I wept for days. There it was, in black and white, our miracle son, his father's gift of a kidney, reduced to being referred to as a drain on local resources. What can you say in the face of such inhumanity? I have re-read that letter only once or twice, as it is too hurtful, but I have yet to find a shred of any caring in it. But then, that's the secret to running a Community Care service, it is of the utmost importance that you hire managers who don't care. Otherwise the whole enterprise would go to pot, and people might actually get a service.

Alas, I have let that woman silence me, because I was worn out, sick with worry and afraid for the repercussions that would be meted out on my son. This has not sat well with me. Then Enable Ireland hired a Speech Therapist, and all hell broke loose, I am still processing that particular collision. Tune in next time for a full report on that insane incident, I think you've all had enough gore for one day.

The struggle goes on and gets worse.
Cheers,
Ann

Sorry About the Pause

2008-07-17T19:55:00.004+01:00

Hi All,

I know you must by now, be thinking that either a). Rory is now already enjoying 3 course meals while perusing the latest edition of the FT 100 index or b). we've all just fallen off the face of the the earth. I wouldn't blame you, as my silence has, I'm sure, been deafening. Just to reassure you one and all, we are all doing fine, and Rory is progressing extremely well despite the appalling level of service he is receiving. I haven't been able to put finger to keyboard this past few months for the simple reason that I have been completely and utterly quashed by the system. I've been at a loss to find a way to relate events without a furious rant which could have landed me in legal hot water! Yet again our tails have been nailed to the rollercoaster that is the HSE, and we have peaked from the high of services granted to the lows of the realisation that the best they have to offer is far from adequate. We have battled the intense feelings of helplessness and entrapment that this situation brings, all the while morning the loss of optimism, our guiding light. I am once again coming out of the fog and regaining the wind to fan those flames, and I will, I hope be able to rejoin the land of the relatively sane in the next few weeks. I am now, at least, capable of ruminating without fumigating on events! So bear with me again as I try to piece together the raw jigsaw that has been our lives for the last few months.

Thanks so much for your continued interest and support, it has quite literally kept us going when we didn't think we had it in us to proceed.

Cheers,
Ann

Another Small Victory

2008-05-07T16:42:00.004+01:00

Hi All,

I am pleased to announce yet another small victory - we have finally secured the services of a Speech and Language Therapist!! I know, it takes a while to sink in but there you have it. After a mere 4 years, we have finally made it into the priviliged inner circle of those who get therapy! Instead of any sense of achievement, I just feel drained and confused. Why did it have to be so hard? Why has there been such a scandalous waste of Rory's time and our money? All I can hope now is that we will actually see some progress.

Fortunately the therapist who carried out our needs assessment has also been 'allowed' to give us a service but apparently we're not supposed to tell anyone so keep it to yourselves otherwise every Tom, Dick and Harry could think they were entitled to it!! Honestly, the longer I battle with this insane monolith that is the HSE, the less I understand its logic. For once, words fail me.

Treatment started last week with the next appointment scheduled for next Tue and following at weekly intervals from then on. I think I'm too exasperated to appreciate it.

Cheers,
Ann

Working My Way Through The Bile

2008-04-23T18:37:00.003+01:00

Hi All,

I'm still, as the Detroit Spinners would put it, working my way through the bile! Fighting for your child's rights is extremely difficult. It is almost impossible to convey the level of frustration, outrage, despair and downright hopelessness that can fell you at any moment of any day. Every parent naturally wants the best for their child, what's best is a movable bar that is raised or lowered according to our perception of their individual potential, but that bar is always firmly set at fulfilling that potential. Our greatest fears are that we, in some way, could hold them back. To have your child held back by a bloody minded bureaucray is the cruelist form of torture.

The endless lists that trundle on for years and years without any sign of advancement, the false starts, the job's worth officials who just rubber stamp files and move on, they are all stacked against you. It can become all consuming and thereby damage you and the very child you are trying to protect. The mandarins hold all the aces while you jump through hoops trying painfully to flex your brain into the way they may think, in a vain attempt to second guess their next move. It's exhausting. I often wonder about how we put up with such a fiasco of a health service. Think about it, what other service do we continually pay for, even if we don't need it, and then when we are unfortunate enough to need to access it we are denied a service? Not even the most dodgy insurance policy would get away with a blank, no pay out, on all claims. Yet we have no contract, no small print, no redress. The people who control the purse strings are not medics, they can't determine the urgency of any need other than the most blunt budgetary ones. They are faceless, nameless and completely unaccountable to anyone. We all ring our hands and complain but nothing changes. We ring Joe Duffy and get the nation talking but nothing changes, it's quite extraordinary how such a royal mess is allowed to continue.

I've been trying to work out the cost of not giving Rory the service he so desperately requires, and it is the stuff of a serious migraine. If Rory had learned to eat at the normal age, i.e. 4 to 6 months, he would have gained weight much faster and the fact that while on dialysis he was restricted to an intake of only 450ml per day would not have been such an issue. Eating and gaining weight would have seen him reach the optimal transplant weight of 10kg much sooner, lets say for arguments sake a whole year earlier. So that automatically means one year less on dialysis at a cost of, according to latest estimates from the Irish Kidney Association, 150,000 euro per annum. This doesn't include transport from Galway to Dublin 3 days a week for that extra 52 weeks, or the nursing escort two days a week.

Lets take a stab at a very rough estimation of the cost, shall we?

1 year extra on dialysis 150,000
Transport 52 wks @ 600 per wk 31,200
Nursing Escort 52 wks @ 500 per wk 26,000
Epo and other medication required
for dialysis patients, est 1000 per month 12,000
Specialised feed 150 per week 7,800
Feeding pumps and Ng tubes est 2,000
Feeding pump feed bags 500 per month 6,000
Extra hospital admissions lets say 6 per yr
@ 4,000 a go 24,000

Rough total 259,000

Annual salary for a speech therapist,
rough estimate 70,000

So assuming we were only held up by one year on dialysis, it could have been more, the difference between hiring a speech therapist , who of course would have treated many other kids as well as Rory is a cool 183,000! And we wonder where the money is going!!! This is a very rough calculation but it warrants closer examination by someone in possession of all the exact costings.

Bear in mind folks that Rory's non eating habit is still costing, even with the kidney transplant, had 70,000 euro been spent in 2003, that would have all stopped at the end of dialysis but instead it goes on and on and on!

This is a crude economic exercise, I wouldn't even know where to begin to try and quantify the quality of life issues or indeed how much it will cost in multi disciplinary therapy as we play catch up on Rory's developmental disorder. Can anyone offer any insight into the logic that is at play here, because I just don't get it!

The similarities with a certain TV commercial spring to mind:

Having your child fulfill their potential? Priceless, for everything else there's the HSE master card!

Cheers,
Ann

Battle Weary

2008-04-20T20:09:00.004+01:00

Hi All,

Greetings yet again from the Western Frontier - where right now, that particular moniker seems much more than a mere geographical term. When it comes to primary health care, this really is the wild west! Good rearing and a convent school education have prevented me from blogging in the last week, such was my fury, that I couldn't come up with a polite way of expressing myself, so I figured that silence was a much wiser course of action. To be honest, I haven't digested the bile enough yet to even go into it now, so you will have to bear with me for another few days while I compose myself enough to write about the last week in a civilized manner.

Rory is doing very well though, which, as always, acts as a beacon of hope in all this madness. His engagement and communication skills are really coming on and he even mastered the magic 'please' word this week. His 'thank you' skills still need some work but hey, it's a start. On the food front, nothing as dramatic as last week's Rice Krispie to report, but he did lick some creamy goat's cheese off my finger on Friday. At first I thought it was a once off fluke, but he came back for seconds and thirds when they were offered! On Thursday, he joined us for dinner again, and had great fun making circles out of his green beans, progressing onto robbing his sister's stash when his own were too mangled to comply with his circular logic. To see him handle food with such ease almost takes my breath away, it's so beautifully normal. This fledgling relationship with food seems to be very much based on the humour he's in at the time it's offered, as foods bravely tested today could be flatly refused tomorrow. It's very reassuring to see that our trust in him setting the pace is beginning to show results. We will gradually build his confidence in his ability to eat if we let him do it in his own good time.

The amazing speech therapist we are seeing privately has arranged for a full evaluation for Rory with a visiting American expert in Dublin on May 11th. It took me all of Friday morning just to fill in the assessment form, the level of detail required almost fried my poor unfortunate brain. I felt like such a bad mother when milestones like the first smile, tooth, and words were not recalled with the requisite accuracy! It will be very interesting to finally get him seen by a real bone fide expert who deals with kids like Rory all the time. Hopefully he won't prove to be the honour's paper to her also! This whole search for integrated therapy has been such a strange stage in our journey with Rory. Up until now, we were used to being part of an extremely professional team who all communicated with each other in an intelligent and rational fashion. They were task orientated and when problems arose, they consulted with equally learned colleagues, all the while keeping Rory's best interests at the forefront of their motivation. I am still at a loss to understand why this can't happen in a community care setting, where rear end covering is paramount and patient care is of little consequence.

The struggle continues for yet another week, I will endeavour to keep the faith.

Cheers,
Ann

Are You Ready Boots?

2008-04-14T20:51:00.005+01:00

Hi All,

As you can see the boots arrived - and Rory loves them! Already I can see an improvement in his balance and he is running with so much more confidence. We've had a great a great couple of weeks, I still can't believe that we haven't been in Temple St since the 27th of March, it's a new record for us. Rory is back there tomorrow for blood tests, the first that will have to be taken without his central line. Poor little man he hasn't yet realised that they will have to stick a needle in him from now on to get the blood samples required, he's not going to be pleased when he figures that one out!

The plod continues with the Needs Assessment appointments, at least now we can stamp in and make lots of noise with the new boots! I won't bore you with the latest round of brain throbbing, eye twitching encounters, but suffice it to say we are remaining polite in the face of some very challenging situations!

Rory is being his usual charming self, he now modestly proclaims to anyone who will listen that he is 'Fantastic" - he was never one for the understatement, our Rory.
He has also recently developed an interest in Rice Krispies and has now taken to pouring the contents of the box onto the kitchen table. He sometimes likes to add milk to his Krispie mountain, then sticks a spoon in the middle, and puts it to his lips! In the world of an orally averse little boy, this is the feeding equivalent of the Good Friday Agreement! In a move as historic as, say Ian Paisley admitting he quite fancies a decade of the Rosary of an evening, Rory actually picked up a single Rice Krispie on Saturday and put it into his mouth! We watched, while trying desperately to pretend we weren't looking, we waited for the gag, the spit and the violent ejection, but nothing happened. The Krispie simply moved round in his mouth and then went the way a krispie should go, south to his tummy! I'm surprised it wasn't the top story on Sky news!

So lets all hope and pray that this is the start of many more snap crackle and pop moments in this young man's already most eventful life!

Cheers,
Ann

Suffering the System

2008-04-11T20:54:00.007+01:00

Hi All,

Please excuse another lengthy silence - I know some of you worry when there is no news. No need; we are all fine and still talking to each other! It's an extremely busy time getting to all of these appointments for Rory's disability needs assessment. It is also probably the most stressful experience to date for me, in all the years we have been dealing with Rory's health needs. The process in painfully slow, it doesn't seem to follow any chronological order. I don't feel like we are systematically working our way through any issues here, what's assessed this week is absolutely the same as what was assessed last week and there is certainly no joined up thinking going on between those who are doing the assessing. I even have to endure questions from one therapist asking me about the status of assessment being carried out by one of their colleagues, as clearly no one seems to be talking to anyone here. It's like dealing with the Fawlty Towers approach to child therapy!

I feel completely deflated by the whole ordeal, I can't believe I have been fighting so long to be met with this kind of "make it up as we go along "type of approach to treating Rory's developmental delay. Naturally, I've been informing myself on what happens elsewhere worldwide in these situations, and it is pretty much universally accepted that kids with a history like Rory's need a multi disciplinary team approach where everyone sings from the same hymn sheet. Unfortunately, this is a cultural impossibility within the Irish community health care system, where the mission statement is never to let the right hand know what the left is up to, and most importantly never put patient care before the preservation of the system. The system is an immovable feast of fear, frustration and frantic red tape where the passing the buck is an art form and fudging the issue is the key to survival. It is a constant source of amazement to me how these people actually manage to get up in the morning.

I will continue this process to the bitter end, because a) the end is in sight, and b) I have no choice, we can't move forward without a statement of need. This prized piece of paper will be complete by the end of May - by which time I will be already incarcerated in a home for the mentally bewildered! Meanwhile we continue to work on Rory's oral aversion ourselves with the help of an amazing Speech Therapist who we see privately. I dread to think of where Rory would be now if we hadn't gone down this route. We are seeing improvements everyday, he is willing to challenge himself more and more, becoming braver with each passing day. Today he sat with us for a meal, he didn't eat anything but he was happy to play with our cutlery and didn't have a complete melt down when he spilled spaghetti on his jumper. He quietly picked it off and dropped it in his dish. Seeing him able to actually handle food without becoming stressed gives us great hope.

I am convinced that Rory's aversion is rooted in issues of trust and control. He has never felt hunger, never had to engage with others to have that hunger need met. To cap it all, anything that came near his face was, at best, deeply unpleasant and at worst, downright painful. We need to work around his feeding regime, making sure his kidney gets the daily fluid allowance it requires but also allowing him time to feel hunger. Then we need to educate him that food is good and not something to be feared. But we have to follow his lead on this, he must choose to eat we cannot force him. He needs the support of a very experienced team to encourage him to make this most basic of life choices. I have yet to find this team.

I am optimistic for Rory's future, he will eventually make that choice, it's just so difficult when meeting his needs is such a struggle within this insane, cruel excuse we have for a health system. It shouldn't have to be this hard.

Cheers,
Ann

A Rare Speech Therapist Siting

2008-04-07T18:44:00.007+01:00

Hi All,

Well, I'm happy to report that I now know what the local community care speech therapy department looks like. Imagine, after 4 years I was finally admitted to those hallowed halls, I even met with a speech therapist who told me she had experience treating aversive eaters!! I was stunned, amazed and even awed, as I had been led to believe that people with her skills didn't exist in this area. Mind you, her office was at the end of a stuffy corridor in a portocabin,so it is entirely possible that HSE local management had just simply forgotten she was there! Like all those letters of complaint I've written over the past 4 years, she too had been sucked up into the ether of the esoteric administration of our health service. I bet if one were to do a thorough inventory of all the corridors in all the cabins run by the HSE, all sorts of treasures would be found; a cure for cancer, cost saving measures that treated patients with dignity, orthotic shoes for the under 5's, neurologists, ambulances and even detailed directions out of Angola signed by a certain B. Cowen. It's like the flipping Narnia wardrobe in there!

Reassured that she wasn't a figment of my overactive imagination, I began yet again to detail my son's complicated history. I should really just type up a flyer about it as I have delivered that speech over 100 times so far this year alone! She responded well, took detailed notes and generally seemed to be quite sensible, a rare gift these days, in my experience. We have arranged further dates for her to continue her assessment of Rory's needs with a view to preparing his service statement by the end of May. But no, she has no idea who will be delivering the services to Rory. Rumour has it that Enable Ireland have actually offered a full time post to a Speech Therapist but no one can confirm or deny that he or she has any experience with eating aversion. So even though she herself may be the best qualified person for the job, Rory will be tied into the services of Enable Ireland even if their new speech therapist hasn't a clue how to treat him. Don't you just love a good old fashioned bureaucracy?- the mind numbing nonsense surrounds you like a comfort blanket that's been infested with fleas!

This week sees us battling a further barrage of tests, occupational therapy tomorrow, with physio and psychology following later in the week. At times I feel like the blood is quite literally being sucked from my veins by this process! On a more positive note though we did manage to go over a week without going to a hospital that's Rory's new personal best, 10 days cold turkey since his last discharge! His new found freedom has given him lots more time to get up to all sorts of mischief, like switching off the telly during the last furlong of the Grand National when all present were nervously clutching betting slips bearing the names of the first second and third contenders!! He was lucky to escape that one with his life! Transmission was restored in time for the action replay, the winnings were belatedly confirmed and then duly celebrated.

So I guess the only up date on this on going battle is watch this space for further details!

lets remember folks it's 5 months on since Rory was given a kidney from his dad and he still can't eat.

Cheers,
Ann

Small Victories

2008-04-02T19:29:00.001+01:00

Hi All,

I'm happy to announce progress on the footwear front!! The obviously flush footwear department of our local HSE Community Care has rubber stamped the purchase of special shoes for our boy's feet! Of course now we wait, as they have to send someone out to actually buy them! I promise photos in 3D when or if they arrive. Although I can't help feeling some kind of residual survivor's guilt for those who may not have been in the inner flush circle on this round Imelda Marcos type indulgent spending! If you know anyone in that situation, still waiting for approval for shoes, please pass on our messages of support.

The other break through, is in the Speech Therapy department! Lets not get ahead of ourselves here folks, we haven't actually been given any service, but we have been given a date for an Assessment of Need. This will merely outline our urgent need for the services of a Speech Therapist, but will then refer us to yet another waiting list, due to the lack of services available in our area! Are you all still with me? We have the privilege of meeting her on Friday, I promise to report in detail on that one, it should prove very interesting.

On a much more tangibly positive note though, I'm happy to report that we are now half way through our first week in almost 4 years without setting foot inside Temple St Hospital! Imagine, our first week since Aug 04 that we have not been in Dublin, we don't quite know what to do with ourselves. This momentous milestone is due to his recent blood results being very good and also to the fact that we said goodbye to his Central Venous Catheter last Wednesday.

The Central Venous Catheter has literally been his life line since starting on haemodialysis in Sept 04. Sited in one of the veins near the heart, it is the magic piece of plastic which gave the team access to Rory's blood for dialysis. Before the transplant, the continued good function of this tube marked the miraculous bridge between life and death for Rory. It had served him very well and really without incident since it was inserted. However, we were not sorry to see it go! No room for sentimentality in this house! Kids who have these can't have baths or swim as this line must be kept dry. We're still waiting for the opinion of Rory's transplant surgeon on him being allowed to have a shower due to his unorthodox urinary plumbing works.

Rory is also back at his Montessori school two days a week. It's such a joy to watch him skip in the door with all of his classmates. He's making slow but steady progress and was even persuaded to sample some yogurt by his teacher! He spat it out before it even hit his tongue, while one of his buddies sagely pronounced that he mustn't have liked the taste! Still he tried it and he didn't vomit or gag like he used to, so I'm officially classifying that as a victory also!

It's fitting, during this Organ Donor Awareness Week, to concentrate on the little victories. If Rory's story has moved you, please consider getting a Donor Card but also make sure you discuss your wishes with your family.

Lets remember here folks, that thanks to an amazing gift from his Dad, a little boy who was born without kidneys is now running round and tasting yogurt!

Cheers,
Ann

A Boy's Right to Shoes

2008-03-31T19:09:00.001+01:00

Hi All,

Sorry for the silence - life has been busy lately what with managing milestones and contemplating military strikes on local HSE positions! As you know we've been running the gauntlet of assessment appointments for Rory's Assessment of Need. Further to this, I have now assessed that the one thing he really needs, is a full time appointment secretary.

So far, we've had his Physiotherapy needs assessed, and guess what? He needs Physio. Then we had part one of his Occupational Therapy assessment, and what a coincidence? - he needs that too! We also had the pleasure of meeting the local Psychologist and wouldn't you know it - he could do with a little support here also. The whole painful process has, at least, helpfully pointed out, that not only will I have to battle for Speech Therapy, but I'll also have a whole range of urgent needs but non existent services to look forward to in the future. Oh be still my beating heart!!

However, my own personal favourite recent encounter was with our local neighbourhood friendly Podiatrist - the person who fits kids with those really attractive corrective shoes. You all know the ones - usually navy, with sensible lace up fronts which just scream "Bully me I'm handicapped". Fortunately, I am very happy to report that they are much smarter these days and don't have that same "use me as target practice" aura.

I'd been waiting for an appointment since last summer - a mere blink of an eye in HSE waiting terms, I know, but 8 months in the life of the fallen arches of a 4 year old represents a large percentage of their life time walking on this earth. We skipped eagerly to our meeting, to be told, what we had already suspected, that yes, indeed Rory did need special shoes. Great, now it's official, where do I sign the form? Well here's the rub. It's not that simple - if it was, then unthinkable things could happen - like everyone who needs a pair might actually get them - and how would we deal with such wanton efficiency?

The very nice Podiatrist inquired if we had a medical card, I gleefully confirmed that we had. She helpfully advised that I get the shoes under the medical card scheme as they were prohibitively expensive. I naively concluded that since we had already qualified for the card and she herself had given her professional opinion of my child's need, then where's the problem? Eh, well no, you see it doesn't work like that. Sometimes the HSE doesn't always sanction them. At this stage, the old familiar temple throb was beginning to make me twitch but, I realised, that in her capacity as the mere messenger, she was clearly not the person to shoot! So I politely inquired how I would know there was a problem - of a HSE sanctioning nature so to speak. I was told that if I didn't get a letter telling me to attend the next clinic in a months' time, then I could reasonably assume that there was indeed a non sanction issue at play. I left in more of a whimper than a temper.

Then logic - the old Nemesis of all things HSE related, kicked in. I thought I'd rather just cough up whatever it costs to get the shoes now, rather than wait for another month on top of the 8 I had already waited, to be told no, and then have to pay for them anyway. So I made a few calls. I eventually happened on the right person to speak to in such situations. She was extremely efficient and understanding - clearly she couldn't have been working with the HSE too long! She would ring her boss on my behalf and get straight back to me, and she did exactly what she promised. Minutes later I was greeted with the breezy sound of her, keen as mustard, tones when she cheerily advised me to" fire ahead with the application as they were flush this month"! In my stunned state I could only wonder if I had phoned her a month earlier, would the news have been less positive? Oh yes, she agreed, it was a disgrace, but that's the way it works - in the leaner months of the HSE fiscal calendar, kids who need orthotics or special shoes go without, if that particular department is, to use their own parlance, less than flush!

Such exacting budgetary management is to be lauded - I am so glad that the best budgeting brains in the country are making sure that no kid gets expensive shoes at taxpayers' expense, without its parents first being brought to their knees!

And lets remember now folks, that there is still a little boy who got a kidney from his Dad 4 months ago who can't eat, and who still wobbles when he runs because of his fallen arches!

Cheers,
Ann

How you can help

2008-03-19T18:19:00.001Z

Hi All,

A brief note to thank you all for your messages of support. In answer to your many questions of what you can do to help, please keep the comments coming on the blog. Please talk about this situation, as I am sure we are not the only ones. Please make your local representatives aware of your outrage. I want to build up a body of public opinion that is informed, first hand, of the chaos that passes for community health care services for our most vulnerable children. The only way we will ever effect change, is if we take responsibility for what is going on. I am keeping this blog to bear witness to what is happening to my family, this is the only way I feel I can make my contribution right now. Your support is of huge importance, so keep the comments coming and pass on the blog address to others in similar situations, lets hear their stories too.

And lets not forget folks, that there is a little boy who got a kidney from his Dad over 3 months ago, who still can't eat.

Cheers,
Ann

That Parallel Universe I promised.

2008-03-18T20:28:00.001Z

Hi All,

Did you ever start something and half way through,when the process is so thoroughly turgid you have one of those "what was I thinking?" moments. Well I'm slap bang in the middle of one of those moments - like just past the half way point in the dark tunnel where you have no choice but to keep going. Such is life in the middle of the latest HSE bureaucratic beauty - known as The Assessment of Need. At this point in the journey, my own personal needs could be met fairly quickly and effectively by a week in the Sun enjoying those drinks topped with paper umbrellas, or a good hypnotist telling me I've just woken from a session and the last 3 months were all a dream!

But alas I'm stuck here grappling with the immobile Gorilla that is the Assessment of Need. This little treasure was obviously cooked up by our country's best and brightest public servants with only mayhem on their minds. It even sounds positively progressive on paper. It's all there in black and white in the Disability Act 2005. Under this marvel of modern democracy, children under 5 years of age are entitled to an independent assessment of their health and educational needs arising from their disability. See, I told you it sounded good on paper. Once assessed, your child will receive a service statement - but you see, now this is where it begins to resemble a dodgy second hand car dealership. Your child is then legally entitled to the services laid out in that statement - now, how good does that sound? Except there's a but, and this is a really big one, your child is only entitled to services where available. Those two words 'where' and 'available' those harmless little collections of vowels and consonants are capable of making a complete nonsense of everything that precedes them. You go through months of assessment, 6 long months in total under the Act, to be given a statement of your child's needs but no provision of services. I warned you it was a beauty!

There are also some lovely twists along the way. For example, Rory, as you are by now, quite sick of hearing, has some quite urgent speech and language therapy needs. You don't really need to be a trained assessor to spot that one. As you also know, Enable Ireland have no speech therapist in Galway, so there is no one to carry out that part of his assessment. Hold on to your frontal lobes here - as you may experience some throbbing shortly. I innocently enquired about paying privately for this part of the assessment. Pure sacrilege on my part of course! This assessment may only be carried out by a private therapist where there is a clear case of urgent need and no one qualified within the public sector to carry it out. Apparently Rory doesn't yet fit these criteria,(go figure that one), consequently, a speech therapist must be found within the next 4 wks to assess him or they will be in breach of the act.

Nothing like the possible breach of an old act to focus the mind of a public servant! I received a call from the local Speech Therapy services manager last week. I had spoken to her last summer before I ended up at the office of the Ombudsman for Children. She was at pains to point out her safety concerns about offering Rory a service - what if he gagged? What if he can't swallow? I explained to her again, as I had also done in detail last summer, that there was nothing physically stopping him from eating - this was an acquired defensive behaviour quite common among kids who have been tube fed from birth. The problem was we couldn't get anything into his mouth! Still she felt uneasy and had even phoned Temple St. to see if they could carry out a special test under control conditions. I politely asked what exactly was involved in the test. "Oh he'll just have to swallow something and it will be filmed going down his oesophagus" she chirped. "But we can't get him to swallow anything" I wailed "that's why he needs Speech Therapy!" Her reply was an abrupt 'we'll get back to you.'

Is it just me, or is this a parallel universe populated by people who's minds are wired in a completely different manner to the rest of us poor mortals?

But lets remember here folks, while the HSE continues to prevaricate, there is a little boy who got a kidney from his dad who still can't eat.

Cheers,
Ann

Swimming the Atlantic in Treacle

2008-03-14T16:27:00.001Z

Hi All,

Are you ready for your next installment? Well here goes, after that investigation which was carried out with surgical precision, -( how else would they have traced all those lost letters?), on Sept. 27th last, we miraculously arrived at the top of the waiting list in Enable Ireland. Champagne corks popped - metaphorically at least as by this time we were up to our what's its in stress with the living related transplant only weeks away.

A social worker was dispatched to our humble abode for the requisite tea and sympathy chat so that a report could be written. So far, so familiar. A very neatly typed report arrived shortly afterwards giving full details of Rory's needs, medical history and stating that we would be admitted for Occupational, Speech and Language therapy but that also there would be input from the in house psychology team ( to review Rory's developmental delay) and that physiotherapy would be offered when a slot became available. Happy days, finally things seem to be sitting into place, and what with a kidney arriving shortly we were in danger of having a happily ever after moment here!

So we merrily went about our business, donating kidneys and generally getting on with the business of daily life. We were blissfully at one with the universe, safe in the knowledge that we had all the systems in place to ensure the best possible outcome for the new kidney. We were discharged from hospital - celebrated Christmas among our nearest and dearest, gave thanks for the amazing second chance at life that our son had been given. Nursed Niall back to health and generally basked in the enormity of what had just happened to our family.

January came - and with it the usual winter bugs and doses so we found ourselves back in hospital for much of that month. I began to get a little frustrated as progress seemed to have reversed so I decided that we should maybe speed up this speech therapy lark. The fact that Rory was still not eating was seriously beginning to complicate our lives. The balance of the anti-rejection drugs was still like playing pharmaceutical Russian Roulette and his lack of normal dietary intake was playing havoc with his sodium balance. This kid needed to start eating now!

With this in mind, I flicked into responsible parent mode again and rang Enable Ireland to arrange a home visit as Rory was still not allowed out in public due to the imuno-suppression.
The feeling I experienced during that phone call will follow me to the grave. I very politely asked to speak to the Speech Therapist, to be told 'Oh her, she resigned before Christmas" "and nobody thought to tell me"? I enquired. A more senior member of staff was called for clearly, and I was assured I would be contacted without delay. Still reeling when the phone rang, I felt surely this was just a mere glitch and of course there are systems in place for events such as this. I explained the situation and was told - "Oh sure you'd have to go to Australia to see her"
So that was it, the plan B for just this type of situation - we'd have to move to Australia - I'm so glad he pointed that one out - as the mood I was in didn't really lend itself to such forward planning! Needless to say the next few days saw what can only be described as a full and frank exchange of views between myself and Enable Ireland.

I pointed out (rather helpfully I thought) that since they had no Speech Therapist they were not now spending their Speech Therapy budget so money could be re-directed to hire in private therapists. The logic of this seemed to be way beyond the bounds of what was bureaucratically possible - the repercussions were un-thinkable! No, no, we couldn't hear of anything as logical as that - this is the public service after all and there'll be no mention of that dirty private word here. Anyway it was completely out of their hands you see it was all the fault of ....... yes, our old foe the HSE. We would be referred to one of their own hospital speech therapists - a therapist was found so end of problem. You would think so wouldn't you? Except, the suggested therapist had already seen Rory in 2004 and deemed him outside her scope of practice - on foot of this we had been referred to Enable Ireland. Are you still with me here? Let me put it simply: in 2004 she deemed Rory to be the honors paper and that a multi disciplinary team approach was necessary - the type which is allegedly only available in Enable Ireland! Now Enable Ireland were sending us back to her in a great hand washing exercise, the like of which, would surely not be found anywhere else in the civilised world!

I do often wonder about that phrase 'public service" - the waiting lists to get in would be the envy of many an exclusive club - thus rendering them, well, not very public really and here we were, actually in the inner sanctum, and we still hadn't gotten any service. So it is a bit of an oxymoron then really don't you think? Maybe they should re name it the Elite Disservice or the Uncivil Disservice? - Suggestions on a post card please!

I returned to the warmth of Temple St and asked what to do. They were suitably outraged - a rather wise stance on their part considering my, by now, murderous demeanor. A letter from our consultant to the HSE was dispatched post haste, stating in no uncertain terms that without Speech Therapy, there was a real threat to a living transplanted kidney. A pretty urgent letter you would think. He even followed it up with a reminder two weeks later - more little urgent rubber stamps maybe? No, lets remember people this is the Public Service - where the cardinal rule appears to be don't deal with the public and whatever you do, don't give them any service! That all happened in January, I have yet to see a reply.

Lets just bear in mind folks that throughout this ridiculous exercise in hand wringing and inaction, there was a little boy who had just got a kidney from his dad and who still couldn't eat.

The saga continues......
Cheers
Ann

Peek a boo

2008-03-13T13:02:00.001Z

Hi All

It feels strange to be back on the blog band wagon and it's not so easy fitting in the time what with Rory the rascal running a - muck! I thought I should just give you some insight into his progress. He was always a fairly high octane young man, but now with a well oiled 2nd hand, only one fairly careful previous owner, internal combustion kidney inside him, he has become an unstoppable force to be reckoned with! He also has the criminal master mind to match his energy so you quite literally never know what he's going to get into next. So far this week I have pulled him out of the fireplace (unlit), the washing machine, the oven (both turned off fortunately)and the fridge. I have gingerly coached him down from the dizzying heights of the top of the TV set and bookcase. I have retrieved toys and kitchen utensils from, the chimney (are we seeing a pattern here?), the junk pile in the garden which I fraudulently refer to as the compost heap (a cheap effort on my part to imply some non existent eco cred). His finest hour was of course on Mother's Day, which I spent trying to retrieve a plastic model of Sully (Monsters Inc character) from the toilet bowl. Only for the Marigold gloves I don't know where we'd be!

Of course when he's not up to mischief, he's busily soaking up bundles of useful information leaking out from television advertising, then helpfully informing all who will listen with pearls of wisdom such as "Eircom broadband is only €15 a month"! Other favourite activities include singing jingles and sticking tape to his lips ( don't ask - I haven't figured that one out yet myself - but no roll of tape is safe in his presence!). His concentration, focus and vocabulary have come on in leaps and bounds since the transplant. His engagement with those around him has significantly improved also, I suppose now he feels well for the first time in his life he has the time to take in the world around him.

His potential is limited only by the lack of services available to him - that's where we come in - we have to secure them by fair means or foul. We also need to set a precedent so that no other child has to endure this type of discrimination.

I'll resume the battle story in my next post - the brain damage I have endured from my most recent communications with that great nebulous Quango called the HSE has benumbed my cerebral cortex to such an extent that I just can't write about it today!

Cheers
Ann

Blogging Again

2008-03-11T20:23:00.001Z

Hi All,

It's been a while since my last post and to be honest I thought my blogging days were behind me. We've all been extremely busy getting used to this new kidney, it hasn't been easy! Rory and Niall are both doing very well and indeed both their kidneys are working a treat. Rory's new regime is a challenge - his first tube feed starts at 7.30 am, his last medication by tube is at 6am and it's pretty much every two hours in between that. Fortunately we've been approved funding for a nurse through the night or I dread to think what state we'd all be in by now! Of course if our little man was eating by himself our lives would be so much easier. And so we come to the cause of my fall back onto the blogging wagon........ Rory's lack of interest in all things edible.

To give you some background, Rory has been fed by a tube in his nose since birth, not ideal I hear you say but when it's a question of life or death, who's complaining? Normally, by normally I mean in most sane western democracies with a half decent health system, kids like our boy wonder would have regular in put from a speech and language therapist to make sure that they learn how to eat and don't develop what's known as an oral aversion or fear of having anything in their mouth. As you may have guessed, we have yet to meet a state funded Speech and Language therapist. A rare and indeed endangered species by all accounts although there have been some reported sightings in the Leinster region, these however are unconfirmed and will remain in the realm of the urban myth, along with other species such as public orthodontists and ABA schools.

Anyway , I digress, we have been on a waiting list with Enable Ireland, the local state service provider for kids with a physical disability, since April '06. It took us 6 squillion phone calls a mountain of correspondence, 3 appointments with the wrong consultant and a near full nuclear meltdown by yours truly, to actually get on that list. And so every 6 months since then, we would receive a very polite letter from Enable Ireland telling us to be patient that although they were not in a position to offer us any services for Rory, we would be kept on The List. The length of this List was, however, a state secret as was the amount of time we could expect to be kept waiting. Just think of if as the public health equivalent of life in Guantanamo Bay.

Of course the keepers of this List and indeed the reason for the existence of said List was of course, no prizes for guessing it, the big, bad and universally despised HSE! (that's The Health Services Executive to our non Irish friends out there) Now the HSE, as we all know, is indeed the source of all that is wrong in Ireland from the weather to our latest football defeat. I am convinced that if you thread back all the problems of this small Nation, they will in fact sooner or later lead to the front door of the HSE, in much the same way as problems, long ago could have been blamed on, say, The English, The Church or The Youth.

With this in mind and a living related transplant looming, I realised that Rory's feeding problems would have to be addressed by hook or by crook! I knew that the anti- rejection drugs were much more stable and effective in tablet form and I don't need to remind you all of those runny weeks we had immediately after the operation. So, last summer, I donned my crash helmet and decided to make a final run at the door with my battering ram! Hardened old campaigner that I am, having exhausted all local routes TD's and media included, I decided this time, to appeal on behalf of my son's basic human right to eat. I took my appeal to the office of the Ombudsman for Children, any very nice to deal with they were too. They at least observed those ancient social niceties like returning phone calls and actually acting on complaints - all terribly quaint these days. However they couldn't take on the case as I hadn't "exhausted all the local mechanisms of complaint." This, I loosely translated to mean that, there was obviously someone somewhere buried under a rock that I hadn't written to or phoned in the last four years. And so yet again, I photocopied the 6 squillion letters, I wrote another covering letter detailing the 50 million phone calls and I politely requested a prompt response. Then, I waited and I waited until 5 weeks later when I feared I was loosing the will to live, I rang the fossil under the rock to be told that he was on leave. Said leave was of an undetermined duration and no, nobody was checking his mail during this period. Breathing deeply and counting slowly to ten, I explained the situation and was told that he would .... look into it. To be fair he did, look into it, and an investigation officer was appointed. I suddenly began to feel important, an investigation officer no less, had the HSE gone all CSI? Things were looking up. My optimism was, as usual, misplaced - I really must stop doing that, you'd think I'd have learned by now. The investigation officer took a further 6 weeks to report. The report catalogued a labyrinthine list of lost letters to wrong addresses, bureaucrats on leave and not being replaced and other such buck passing pap before finally making the following recommendations and I quote:

1 That Galway Primary Community and Continuing Care (now there's a mouthful !) Occupational Therapy Dept inform Temple St Children's Hospital of the correct address for correspondence.

2. That Galway Primary Community and Continuing Care Occupational Therapy Dept ensure that a written response is issued to all written referrals within a defined timeframe.

Eh Hello? No mention of any treatment then so officer is there? Phrases like " the dog ate my homework" spring to mind here.

But lets remember here folks that all this time there was a little boy who was about to get a kidney from his dad, and he still couldn't eat.

The story continues........ If you can bear it, tune in for the next chapter when we will learn about what happens when you get to the top of the list where you meet another parallel universe called The Disability Needs Assessment. I won't go there now as I'm trying to carve this saga up into bite size chunks -

Cheers
Ann

Release of The Temple St Two!

2007-12-13T22:34:00.000Z

Yes you read correctly - We are being discharged tomorrow!! I can't quite believe it, in fact I'm in disbelief. I had been almost afraid to hope this would happen and had really prepared myself for Christmas dinner in Temple St.. Rory has made miraculous progress since last weekend and we are now ready to fly solo. We will continue to attend the hospital 2 days a week in the short term, to make sure his bloods and medication stay on track. It will only take the tiniest glitch to have us readmitted, but that's not something we haven't already lived with for the last 4 yrs. Rory won't be able to mix in large groups for a while, so school and public transport are out 'till well into the New Yr. Apart from that, he's now officially home use friendly and ready for some Christmas cheer!!

It will be an emotional day for us all - I wouldn't be surprised if the ward staff are offered counselling, for Post Rory Discharge Stress Disorder (PRDSD). I'm told symptoms can include watery eyes, wringing of hands, lumpy throats and, in severe cases, uncontrolled weeping!

Take a bow, all of you, and take credit for the part you've all played in this miracle. Your prayers, of every denomination, your good wishes, practical help and general out pouring of support have contributed hugely to this amazing day. It has been wonderful having your company on this roller coaster ride, your solidarity has kept us sane. Thank you all sincerely. We have some way to go yet on this journey, but each step is considerably eased by the knowledge that there is a large community out there wishing us well.

Here's hoping this is the start of a new adventure called normal life ....

Cheers,

Ann

Brief update

2007-12-11T22:55:00.000Z

Hi All,

Just a quick note to let you know that things are still going to plan - blood results are encouraging. We may also hold off on starting the new meds for a couple of weeks to give Rory's system a break. Once again praying like mad and keeping everything possible crossed, there's a chance we'll get home for Christmas!! Too tantalising to think about really!
Cheers
Ann

Reunion

2007-12-09T23:37:00.001Z

This is the first time we've all been together in a month. It's such a long time when you're only small. Such was Rory's delight at seeing his Dad and big sister, that I can now report a serious drop in nappy output and an even more significant improvement in his blood results. An improvement that meant we could even visit without wearing masks today. I am almost afraid to say that we may have turned a corner! Tomorrow will be a real telling point. Then hopefully, if we have finally settled down, we can start to do it all over again with the next batch of anti-rejection drugs! Apparently, this lot are even more notorious for being a very moving experience! We'll have to re stock our supply of nappy rash cream! Round one definitely goes to the drugs, I just hope round two goes to Rory!

Jess took some time out from curing her brother to have some fun with her Dublin friends on Santa's steam train. A well deserved treat for the world's best big sister.

Cheers,

Ann

Slow progress

2007-12-06T23:38:00.000Z

Hi All,

We're still hanging in there, can't really say that the poo situation is any different - maybe marginally better but to be honest I'm poo blind at this stage. Every nappy has kind of merged into one - I've lost my ability to distinguish between watery, mucousy, extremely runny, slightly thicker or even my own personal favourite, pasty! At least we know now that we have over shot on the dose of anti rejection drugs as Rory's immune system is now temporarily shot! He is in complete isolation and no one can enter his room without a mask!- However, his bloods are already improving as we have significantly cut the dose so we would expect to see a big improvement in his immune system in the next few days.

I have been, as always, so impressed by the attention to detail carried out by the team. They are intimately acquainted with every nappy and what drugs or feed recipe preceded it. Everything is plotted in anorak detail, it puts trainspotting in the ha'penny place! Nothing in Rory's care plan is changed without detailed discussion with me and my opinions are always taken into account. If you do have to be locked in a hospital room for weeks on end it is very helpful to have a say in what's happening.

When I get restless it helps to think of the longer term aim, it's worth putting in these frustrating weeks to ensure the longest possible life for this amazing kidney. When we are finally released from our incarceration - you won't see us for dust. Take note all of you out there with spare rooms in far flung places you may want to review any hastily issued invitations, once we get travelling, no guest room on the planet will be safe!

Cheers,
Ann

2007-12-05T21:58:00.000Z

Hi All,

It's been a pretty frustrating few days for everyone here - except Rory, he's blissfully oblivious to the cat and mouse games being played with his medication and feed. Each change to his routine - (and Oh My! there have been many!) has a knock on effect on a whole host of other issues. His cocktail of meds is still resulting in the runs with the low level absorption of his anti-rejection drugs. So each poo is documented, weighed, inspected, discussed at length in terms of colour, texture and volume. I've become quite the expert. The poo patrol team had a long conference yesterday and we feel we may have a lead on the right combination of drugs, feed and supplements. It's like being in the middle of an extended game of Immuno-supressant Cluedo! Is it the Codeine in his colon with the peptide feed? Or the Acidophilus in his Alimentary Canal with the 30ml flush? I fear we've been a bit more Clousseau than Colombo lately and would really want to up our game here if we are to crack this case.

In the meantime Rory is busy being charming. I've really noticed a huge improvement in his ability to concentrate and complete tasks since the transplant, he seems much more focused and organised. He has school everyday now with one of the wonderful in house teachers from the Temple St primary school, she has also noticed a keener focus. So it's not just his mammy saying he's wonderful!

The Galway gang are doing well and planning a visit to us at the weekend. It'll be lovely to have all four of us together again, for the first time in a month.

Cheers,
Ann

First outing!

2007-12-02T23:07:00.000Z

Hi All,
I enjoyed my dose of Galway tonic, and verified that Niall is being well looked after by highly qualified nursing staff! Big sister nurse Barrett is playing a blinder and Dad is looking all the better for the excellent quality of care he's getting.

I'm back in Dublin with boy wonder. He's in top megawatt Rory form. Delighted to see me back, although, I suspect he didn't miss me too much judging by the orderly queue of ward staff outside his door waiting patiently for their turn to play with him! Medically, things haven't really moved on much, but his form, energy and colour etc are much improved. We're still battling the runs and the consequent mal absorbtion of his anti-rejection drugs. We are making progress, but it is frustratingly slow. On a brighter note, today, Rory had his first trip outside the hospital in 3 weeks! A friend very kindly whisked us off for a stroll in the Botanic gardens, a favourite haunt of Rory's as he loves terrorising the local squirrel population. An enthusiastic Yahoo! was heard from the back seat of the car when he realised our destination. The very blustery conditions certainly took the edge off any hosptial cobwebs.

So tomorrow we battle on again trying to lower the frequency of his over zealous nappy output and increase the levels of those all important anti rejection drugs in his blood. Fingers crossed we make progress as this is the only thing stopping us from going home.

Cheers,

Ann

Pause

2007-11-28T22:11:00.000Z

Hi All,
I've arrived safely in Galway and all here are very well. It was very tough leaving the little man behind. However, I've just phoned the hospital, and Rory's doing very well. I'm going to take some time out and might not post again 'till the wkend.
Cheers,
Ann

2007-11-27T23:09:00.000Z

Hi All,

Not much to report today, except that more of the old Rory is appearing everyday. His stamina is improving, along with his attention span and his interest in his toys. The two main issues at the moment are; the runs -although we maybe getting to the bottom of it (pardon the pun) as slight traces of a bug were detected in his samples. Not enough to warrant any treatment but a bona fide bug none the less! The other issue is getting the dose of anti rejection drugs right; too little and they're ineffective, to much and they can be toxic to the kidney! Don't you just love these medical conundrums, they're just so darn definitive, it's a good solid 'either or' situation! Neither of which is desirable! Of course his intestinal turmoil is also affecting his absorption rate of the anti rejection drugs, and any antibiotics we could use to give the gut bug the old heave ho, well, they would mess even further with the absorption rate of said anti rejection drugs. So there you have it - the dilemma du jour, all suggestions on a post card please! I think this is the honours paper in transplant science, I wonder is too late to change to pass? Luckily I'm getting extra grinds from the team, who are an inspiration in the art of patiently answering the same stupid questions over and over again.

As you may have gathered, my brain is now fried. I am very glad to be going back to Galway tomorrow, to unscramble the circuitry and spend some quality time with Niall and Jess.

Cheers,
Ann

Sense of humour returns

2007-11-26T23:37:00.000Z

Hi All,

(Sorry about the layout today but am having a spot of blog bother!)
Medically however, things are still pretty much going to plan, we have negotiated a lower volume of fluid intake for Rory which, mercifully, led to a consequent drop in output. As you can see from the photo, his sense of humour has also returned in earnest. Hearty chuckles could be heard from cubicle 9 today. We have also started the campaign to Free The Temple St Two! We're not planning any militant action just yet, but we may have to review this policy if our demands aren't met within the next few weeks. Cabin Fever is setting in - its intensity is directly proportional to Rory's increase in mobility. I would fear for the safety of staff and other patients if it is allowed to continue unchecked! New Bob The Builder figures had to be called in as back up today to quell the unrest. I smell busy times ahead.
The Galway advance party are also twitching so I guess we must all be on the mend.
Cheers,
Ann

Sitting up

2007-11-25T22:25:00.000Z

Hi All,

For those of you suffering withdrawal symptoms, sorry for not 'blogging' yesterday, exhaustion took over, I'm suffering from milestone meltdown! Here's yet another two for the trophy wall, Rory sat up unaided and took his first few steps. He ignored the programme set up by the physio and just got on with it himself, bypassed the boring bits and went straight for the end result, very typical Rory! The current challenge is to tolerate the litres of fluid being pushed into his little system everyday! He is now being expected to tolerate almost 5 days worth of fluid in only 24 hours. It's taking binge drinking to a whole new level! Not to put too fine a point on it, but, what goes in, must come out! I'll spare you all the details, but suffice it to say, I'll be buying shares in Pampers first chance I get! The banana milkshake has had some effect but I think the root cause of his over eager evacuation is probably just sheer volume. It'll take time so I'll be maintaining my Sudocream vigil for the foreseeable future!

Reports from the resting troops in Galway remain chipper, the home fires are burning and the new TV remote control is working overtime. I don't see that remote lasting long once Rory gets home though, he was named as the prime suspect in the disappearance of the last one. Foul play was definitely suspected!

I hope to make it West myself for a few days this week. It's been two whole weeks since I've seen Jess, it feels like two years, I miss her. I also really need to recharge my batteries and refresh my wardrobe, I'm getting really sick of everything in that suitcase.

Cheers,

Ann

'Fraid we've gone all normal

2007-11-23T22:35:00.000Z

Hi All,

It's fairly safe to log on today - no tissues required. Rory's progress is continuing well as you can see. He's a long way from full Rory throttle yet but making very brave efforts. We've started physio to get him back on his feet, his muscles are all quite tight after his 10 day hibernation. His system is still in a heap from the surgery and the new barrage of anti rejection meds. I've changed a lifetime's worth of dirty nappies of all shades and sizes in the last few days. Tomorrow's trial cure is the consultant's own personal favourite for this type of situation.....banana milkshake! So my homework for the morning is to whiz up banana and natural yogurt! This will all go down his tube as he is still resisting anything by mouth! As you may have guessed we have pretty much thrown the kitchen sink at this problem so it's back to the old reliables. I'll be submitting a paper on it to The Lancet if this one works! All other non pharmacological suggestions greatly appreciated by the way.

Niall's recovering well, busy receiving guests bearing liquid tokens of their esteem for his brave act of generosity. Like the true selfless being that he is, he is doing so without so much as a whimper of complaint.

Cheers

Ann

First Wet Nappy Ever!

2007-11-22T23:14:00.000Z

Hi All,

I know I said I would spare you the emotional milestones but allow me just this one more!

I changed my son's first ever wet nappy today! OK, so it wasn't completely normal, the urine did exit through a whole in his tummy. But hey, it was a nappy and it was wet!! The urine bag was removed today without much fuss, of course jelly legs here had to leave the room while they did it I had worked myself up into quite a squeamish lather! Now Rory is left with a little slit like incision on the lower left side of his bellybutton, out of which the urine just drains constantly. There is a medical term for it but I can't even pronounce it never mind spell it. From a home management point of view this will now be collected by an absorbent pad slotted inside a regular nappy. The worrying prospect of me having to acquire a whole new set of urine management skills has now been put to rest. What a relief, as I am an old dog and these were potentially new tricks! Rory seems very comfortable with the whole set up, wincing only slightly when the pad was changed, but he won't feel anything once the wound heals. He was a shade sunnier today than yesterday, asking for snuggles and even managing some quality floor time with Scoop, Muck and Dizzy.

Of course the other main event of the day was the return west of the right kidney! Niall was formally discharged from the excellent care of Beaumont Hospital. It was lovely to think of both he and Jess together again at last. Although I will really miss his company here in Dublin, I won't miss the trek between the two hospitals. He is now in intensive care in Father Griffin Rd., where I'm sure, in due course, he will need to be surgically removed from the couch! I really hope there's some quality footie on the box for the up coming weeks!

Keep the comments coming they're a tonic.
Cheers
Ann

A Fairly normal day

2007-11-21T23:41:00.000Z

Hi All,

Reading your comments, I realise that after all the emotion of the last week, we could all do with a relatively normal day. So, with that in mind I will spare you all your morning weep into your cornflakes and tell you that today passed quietly without any major emotional mile stones. I personally don't think I could have done another one. I need to psyche myself up for my new found normality! Rory was fairly comfortable today, although, he was more lethargic than yesterday, which was to be expected. Our aim for the next few days is to get the right balance between pain relief and easing off on the sedation. It was the first day we heard any complaint out of him, so we are still tweaking the pain killers. We had pretty much gotten on top of it by this evening as I left him, he was hugging his teddy and watching the Simpsons. Kids who battle illness are incredibly inspirational, they are completely honest about how they feel. When Rory isn't feeling well he just shuts down and concentrates all his energy on getting better, and as soon as he feels better he just gets on with the business of having fun.

Patient senior was in top form today, he even made it all the way over to Temple St on his own.
He has been given the all clear to check himself out tomorrow, so look out Galway he's on his way home! It'll be great to get the advance party west, we're all really missing Jess. She's having a ball being very well cared for by all her aunties and grand parents. She's very excited that since Rory won't need his wee wee machine anymore, we'll all be able to go on holiday together for the first time. Ah yes the sweet smell of normality....

Cheers,
Ann

First hug for a week!!

2007-11-20T22:53:00.000Z

Hi All,

What can I say about today except Thank You! Thank you to whatever deity you're having yourself, thank you Temple St, thank you Beaumont and thank all of you for praying. It sounds so simple, so inadequate yet no other emotion even comes close to describing the emotional depth of gratitude felt today. Rory was formally discharged from ICU and welcomed with open arms, red carpets and brass bands back to the renal ward. It was literally and emotionally a very moving experience.

He arrived back to a hero's welcome, eclipsed only briefly by his father's arrival. The reunion between the two was fabulously informal! A groggy yet gleeful Hi Dad! from Rory and a pained,lovely to see you lad, but those stairs nearly killed me, nod from Niall. Between the move and the lack of pain relief both men looked the worse for wear. So I was mercifully saved from another excuse to weep copiously! It would have seemed just a tad over the top given the lads that were in it!

Rory's afternoon was a mixed one, the initial euphoria gave way to a troubled morphine downer. This was relieved in jig time by the, as ever, amazing staff. He went from shaky, can't move from the bed status, to asking me - can we go out in the buggy within seconds once the new meds kicked in! Then the team met and discussed his normal blood pressure, his normal oxygen saturation's and his normal fluid intake volume! We're all so normal now I could puke! I've just about got my head round the BP and the sats, but a fluid intake of 12oo ml in 24 hrs nearly floored me! This is the lad that had 450ml a day max for the last 3 yrs, now they want us to cram a whole weekend's worth of feed into him in a single day! Like I said before, this whole normal lark is going to take a whole lot of getting used to!

Niall is just as bemused as me, but I guess it must feel really satisfying to know that without his incredible bravery, this whole normal label could not have applied to our son. The more I live through this, the more I realise that a living related organ transplant is the most perfect meeting of science and the beauty of the human spirit. Long may they continue to compliment and enhance each other.

Cheers
Ann

PS Sue, can I just say again, those cakes today - seriously quality goo!

Ventilation is so yesterday!

2007-11-19T22:27:00.000Z

Hi All,

I'm thrilled to reveal real progress today!! Rory was extubated at 12.30 today - the ventilator tube was finally removed and he continued to breath beautifully on his own. His voice is still very low and he is quite groggy but like a true trooper, the first words he uttered were Angelina and Scoop - for those of you not familiar with 4 yr old popular culture, that loosely translates as follows: I want to watch my Angelina Ballerina DVD followed by a few episodes of Bob The Builder shaprish please.

This was followed by an emotional reunion with his old blankie and also a brand new Lofty, which I had purchased in a haze down Henry st on the day of his operation. It is absolutely wonderful to have our old Rory back. It had struck me yesterday how much I had missed his voice, as he had been completely silenced by the ventilator. He was a lot calmer and more settled than expected, happily settling into watching his DVDs and checking out his new toy. Of course news of his tube release spread like wild fire round the hospital and all his fans from the renal ward were beating a path to his bedside - we almost had to call security!

We are hopeful to have him back among his mates on the ward tomorrow, it all depends on how his night goes. I'm bracing myself for a busy week ahead.

Niall is much better also. Sadly there was no release for him today as he is still on I/V antibiotics and will have to stay put 'till Wed at the earliest. I was worried he might become institutionalised. My fears were put to rest during his daily constitutional ( his most adventurous to date) when he managed to leave the ward and make it as far the main hospital door without so much as a rise in pulse rate. His first foray into the outside world was so encouraging that we're even discussing a visit to Rory tomorrow. It's hard to imagine how he has gone through all that pain and

not yet seen the miraculous results of his generous gift of life.

So whatever you lot are putting in those prayers, it's working. Can we be greedy and ask you all to continue please - just for a little while longer....

And to those in Dublin offering to meet for coffee - yes please, but can we go somewhere that also serves really gooey cake? Please keep up the blog comments they are a life saver.

Cheers,

Ann

Missing the sedation

2007-11-19T00:13:00.000Z

Hi All,

The boys are well and I think both of them are itching to move! Rory was very awake today which was both a blessing and a curse for the poor little mite. They're weening him off the sedation with a view to taking him off the ventilator. The downside of that is, he's more aware now, and the tube is driving him insane. He is making serious attempts to take medical matters into his own hands and yank the whole lot out. While I admire his determination and self preservation, I'm not really inclined to encourage this course of action as it is not without it's problems!! Not the mention the fact that he could be barred from the ICU for life!! However Bob the Builder came to the rescue in the form of 3 DVDs and a large screen TV. This is a tricky time, he's fitter and less compliant but not yet ready to fly solo. He's also not willing to listen to reason and who could blame him.

Niall is progressing well, talk of discharge tomorrow continues but no conclusions have been reached - we'll know more in the morning. The ward, which he had to himself, is now starting to fill up so suddenly the accommodation has lost its sheen. Auntie Mags paid a flying visit again today - armed with delicious homemade cakes- she has truly embraced her inner domestic goddess since discovering that Nigella book. She's off to Cuba in the morning for 3 months, we will really miss her and her lemon meringue pie.

So fingers and all other bits crossed we'll see some movement closer to the door tomorrow.

Cheers
Ann

Settling into the Routine

2007-11-18T00:04:00.000Z

Hi All,

Another day down and some more improvements to record. Niall can be now seen doing laps of the ward on foot, tickets available on line and from Ticketmaster - book early to avoid disappointment! He's almost back to his old self between pain killers, he slips a bit just prior to the medication, but overall, he's definitely more user friendly.

I've settled into a sort of routine, I usually hit the ICU just after breakfast, then I try to meet someone for coffee - outside the hospital - the cafe in the Hugh Lane Gallery in Parnell sq is becoming a firm favourite. (By the way if anyone out there knows any of the staff could you explain that I am not some crazy lady? You could explain that I'm just going through a difficult time and that I speak very highly of their scones!) I have another visit with Rory before I make my way to Beaumont to see the kidney's former owner. Back into town round 7ish for dinner and back up to spend the evening with Rory.

The main man is still peeing for Ireland, 150ml in one hour today - a new personal best for this talented young fella. He's still ventilated and as usual we will revisit that situation tomorrow. His fluid balance is getting closer to the desired happy medium, but Rory being Rory, won't be pushed into doing anything! He's taking his own time and has chosen the scenic route through this week. His central line was taken out today so we are at least one wire down on yesterday. His BP has been classic Rory - all over the place, thankfully we all know his form and we try not to get too excited about it. Generally you could say that things are still going to plan - but I think the schedule is taking a bit of a hammering.

We're not out of the woods just yet, but lets just say we can see the clearing with the picnic tables just up ahead. Don't take your feet of the prayer pedals yet.

Cheers
Ann

Mist lifting!

2007-11-16T21:49:00.001Z

Hi All,

Not much news really since I last logged on earlier today. Just back from Beaumont where Niall is a much happier camper than yesterday. He's off all drips, tubes and wires of any description and looking all the better for it too, I might add. They're even beginning to discuss discharge over the next few days, which is hugely encouraging. Rory's progressing according to plan but I think he's really itching to get out of that bed. He's still sedated but it's tough on him having physio to shift the fluid - and then being stuck back to the bed. His new kidney is still working a treat with amazing blood results, the like of which we have never seen before - well within normal range - a term we have never before heard uttered in relation to Rory! He just hasn't done normal before - I hope he doesn't have problems adjusting to this new found normality.
I think we all will - normal has been a pretty elastic term in our house for the last 4 years.

Cheers
Ann

Coming out of the Fog

2007-11-16T15:22:00.001Z

Hi All,

Things are much more settled today for both the lads. We were told that day 3 can be tricky and I think I can safely say (for Niall anyway), that tricky doesn't even come close to describing the day he put in yesterday. Rory had a settled night, the BP and fluid balancing act is beginning to find a happy medium - don't want to speak too soon though as this is Rory we're talking about after all! He is still ventilated and the plan is to continue like that until tomorrow when we will revisit the plan! He has a little fluid on his lungs which is totally normal so we just want to reduce his fluid intake and increase his urine out put - which sounds quite easy, but from what I've witnessed, involves quite a lot of hard sums! The pee is still flowing beautifully and is a delightful shade of autumn amber, full bodied and by all accounts has a very good nose! My clever son is multi tasking - peeing and breathing simultaneously.

I'm feeling less punch drunk and am now understanding at least one word in most sentences uttered to me by the team. I'm trying to get as much rest as possible to be ready for that little warrior when he wakes up. I'm sure he's going to be less than impressed with how he's going to feel. It'll be a case of crash helmet on, head down and get on with it!!

So prayers still required for another wee (pardon the pun) while please, and again the comments on the blog are becoming the highlight of my day!!
Cheers
Ann

2007-11-15T22:46:00.000Z

Hi All,

Day 3 is behind us and we're still in pretty good shape - considering! Niall had the worst day today due to a recent separation from his morphine pump. The pain has really kicked in. It's very tough for him but news of the litres and litres of that amber nectar that Rory is producing is helping. I'm a bit like a spare wheel at the moment as there isn't much I can do for either of them. Rory had another ultrasound on Niall's old kidney today and they said it was very good looking - so at least now we have clinical proof that Niall's beauty isn't just skin deep!!!

Rory's continuing to produce the goods at the rate of around 80ml per hour. His blood pressure is stable (ish) and although still ventillated, he is breathing on his own. Even while heavily sedated he was making attempts to get out of bed. Horse's doses of sedation and he still wants to run a muck! God help us all when he is back to full on Rory power!

No date yet for moving him out of ICU, they are working at getting his fluid balance right - which is a question of trial and error, but he has made a very good start. The team are with him round the clock and are, as ever, attentive to our every need. Their vigil is constant, caring and utterly awe inspiring.

All your messages are fantastic - I really look forward to logging on. It is hugely supportive to know that so many people all around the world are thinking of us. I will have more photos soon when the boys are back to their photogenic best!!

Cheers,
Ann

Still Peeing

2007-11-14T22:12:00.000Z

Hi All,

Really great to get the comments from you all they're a real boost on these long days.
Rory's still peeing like a race horse here- Chateauneuf de Barrett '07 is proving to be an exceptional vintage!! The kidney's previous owner is getting on very well without it- no separation anxiety detected just yet.
There's a palpable air of excitment here in Temple St and his old freinds from Crumlin are sending messages of support too.

It's a waiting game now over the next few days- Rory's still ventillated and heavily sedated (wouldn't mind some of it meself at this stage), it's a question of getting the fluid balance right and letting the kidney settle into it's new home. It's probably in shock from having to downsize so drastically - it must be the renal equivalent of moving from a 5 bed detached mansion to a bijou studio appartment! Mind you the room for expansion will be endless once we get the little lad eating!

Keep up the prayers don't get off your knees just yet!
Cheers
Ann