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

Suffering the System

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

Small Victories

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

That Parallel Universe I promised.

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

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