Friday, 28 November 2008


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.


Wednesday, 19 November 2008

Defending The Indefensible.

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.


Friday, 14 November 2008

From the Sublime to the Downright Dangerous!

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.


Monday, 10 November 2008

An Anniversary to celebrate with Pride

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.