Free Falling into Normal

For over nine years, I have craved normal so much I could almost taste it, but in the elasticity of that term I now fear I may have wished beyond the stretch. Normal takes some adjustment and I don't know if I can get enough pliability back into the elastic band holding my life to allow me dangle slowly into a soft landing on normal soil.

My days were measured in 60ml syringe-fills of fluid, our mealtimes a liquid formula of complete nutrition and although stressful, we had become accustomed to its rhythm. The fasting pre and post anti-rejection medication was followed by the feasting of night feed pump. Hunger never stalked our house, it never got a chance, locked out as it was by the security sentinel of naso-gastric tube feeding.

It's not like we haven't prepared for this day, it's not like we haven't worked hard, throwing every form of sensory oral-motor therapy at it. It's not like we haven't seen 'ologists from here to kingdom come. For years we chipped at the intractable monolith of oral aversion with bite blocks, chewy tubes and oral face massagers. We pleaded, we begged, we threatened and we bribed and still he said no.

I don't know what turned it round but somewhere around the end of last year, I sensed he was ready, don't ask me how but I just knew. At this stage in my combat training at extreme parenting when I see a chink in the anti-eating wall - I become like a heat-seeking missile and trow enough artillery to sink a North Korean despot at the problem! And Like any North Korean despot, my Boy Wonder played the brinkmanship card all the way to seconds before the deadline then acquiesced with his customary charm.

The tube came out a week ago, he is eating like a horse I'm working on this new normal life of ours but some how I feel bereft. I don't know what to do with my time, I'm not very good at normal and I wonder if maybe there is a Fás course for this kind of thing. Could I be taught the skills of normal life? I also need a maternal NCT - my last one was post transplant. I'm sure it happens to many maternal front liners - those who have been on red alert for so long with their sick children that they can't turn down the thermostat on their flight-or-fight radar. My call to arms is all too ever present and like some now defunct post-peace-treaty freedom fighter, I'm finding decommissioning a challenge.

As always Boy Wonder has adapted with ease, asking for food albeit puréed, complaining of hunger and I am so shocked by the instinctual nature of his demands that I have to ask him to repeat his request.

This will be a beautiful adjustment once I allow myself to lay down my weapons and embrace yet another, glorious transplant dividend: normal eating by a hungry nine-year-old boy.

What does one do when la lucha no continua?

Cheers,
Ann

Don't Worry Be Happy! (she said hopefully)

As you can see the tube weaning is still going well - he's down from a previous night feed of 800ml to a mere 500ml and is beginning to eat me out of house and home. It's such a joy to hear him ask for food, it still makes my heart flutter. I'm working slowly to make sure he is very comfortable but if I'm being really honest, I probably need the comfort blanket of that tube more than him. It's taking about two weeks to reduce each 100ml; there's a lot to consider apart from the mere calorie intake. We have to maintain his fluid balance which is essential for his kidney, but also we don't want to mess with the absorption of his anti-rejection meds. It's all a bit of a numbers game really.

My next task is to practice getting the medication into him orally - I'll start by squirting the same volume of water into his mouth and then try to persuade him to drink 60 ml water chaser to flush it down. That should be fun! I see a whole new level of bribery on the horizon, this could get expensive!

My current major problem is trying not to lose the run of myself - I can't seem to stay in the moment - I keep worrying about three steps ahead of each stage we meet. It seems so counter intuitive for someone who had to stop planning for so long. Now I'm fretting about calorie intake on 400ml of liquid feed, I wake up a 4am to have a right good worry about how much double cream I'm sliding into his food, is that the reason for his constant runny nose? If I reduce the dairy intake - how will I beef up calories without adding volume? What happens at our next clinic visit in four weeks' time when he's due for a tube change? Do we change it or just bite the bullet? I've even started worrying about next year which is a complete waste of time and an alien concept to me.

Of course then, in a blinding flash of the bleeding obvious, it dawns on me: I have been so privileged being forced to live each day as it came with Boy Wonder that the concept of his future is something I have yet to learn to handle. It's all so tantalizingly close this life after tube, I'm worried I may not be up to the job. Boy Wonder, on the other hand will take to it like a duck to water.

There is a lesson in there - if I could cop on and learn it!

Cheers,
Ann

The Sweet, Sweet Taste of Persistence

After nine long years of being fed by a naso-gastric tube, (a world-record in paediatric medicine I'd bet) this week we start the long process of weaning Boy Wonder off his feeding tube.

I can't quite believe I am about to write this post! The whole raison d’être of this blog seems to finally be materialising before my very eyes. Like every 'normal' milestone we have met along the way, this one too threatens to overwhelm me by the sheer beauty of it's very bland, quotidian nature. At the risk of becoming a complete cliché; I do have to repeat that for me the wonder has been in the ordinary - when you live outside of 'normal' the chink is never too wide, so the wonder rushes in when you least expect it.

We have seen 'ologists, we've seen specialists, we've tried bribery, pleading, protests, threats and every other trick in our parenting arsenal; all have failed. I stopped trying to push the agenda about two years ago, realising then that my Boy was blessed with a will of steel; even my legendary pig-headedness was no match for this young man who had confounded all odds. I put myself in his shoes and thought what's in it for him? Food is terrifying, he has never learnt to eat, he has never known hunger suffering as he did from hormonal anorexia, due to his lack of kidneys. Even when transplanted with his Dad's  second hand cast off, although he felt hunger - he didn't know what it was nor what to do about it.  The most basic human driving force was unknown to him. The dilemma was how to teach it if he refused, through sheer abject terror, to put food in his mouth.

This was a major brick wall for his parents, we both come from a long line of great eaters on both sides - in other words we love our food. Personally I love thinking about it, talking about it, cooking it and more recently I've taken to growing it - all in the hope of waking up this food gene that Mr Mendel swore to me through school biology texts he should have inherited.

Thanks to the work of many great people not least a gifted Special Needs Assistant at school, Boy Wonder will now eat small amounts of puréed food which we then supplement with 800ml of complete nutrition formula via feeding pump overnight.  We have been working steadily over the last five years with an American Oral Motor Specialist to try to break down his oral aversion. Finally a Skype conference with her last week proved so successful that she set our weaning plan in motion.

This week he has reduced his overnight intake by 100 ml and guess what? He's hungry and he knows it.

And now starts another miracle on our road to three meals a day, watch this space ...

Cheers,
Annb

A Winter Tonic.

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

Working My Way Through The Bile

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

Blogging Again

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