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 -