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Requiem To A Feeding Tube Part 4. Life Beyond The Tube.



Face Book Status Update 14th Feb 2020

For almost 9 years this has been our life. 4 hourly meds and tube feeds 24/7 round the clock for her first year and multiple times a day there after. For almost a decade we’ve had several “meds cupboards” and a “meds fridge” and our house is scattered with supplies of syringes, feeding tubes, spare g tubes, cleaning supplies, bolus syringes, bottles, syringe toppers and extenders. I know we are less than a month off tube but I’m being positive and this shit is going in the attic.

If I never have to use a g tube again it will be too damn soon.





As you can see things changed quite dramatically from the tube fed toddler who was completely dependent on enteral feeds to stay alive, to the 8 year old who could not only eat and drink by mouth but now take all her medicine in tablet form, sometimes up to 20 tablets a day. How on earth did we get here? Honestly, I still cant get my head around it.

As a baby we were told nothing but doom and gloom in regard to Alices future. We were constantly reminded of what she wouldn't do because frankly the list of what the could guarantee she would do only involved one thing, and that was die young. Absolutely nothing else was expected.

And its odd, because even right back at the start, some of it I accepted quite easily and some of it I just knew they had wrong. For example I always accepted Alice would be in a wheelchair the majority of the time but something in me knew she would walk to some extent. Turns out she can walk quite a lot. Badly, but a lot. In terms of speech, I always accepted that she'd probably never speak, but again something told me she'd either learn sign language or she'd communicate with a computer. Turns out she has near constant verbal diarrhea and many times a day I beg her to just, please, pleeeease, stop talking.


The possibility of her being toilet trained was filed in the "Unlikely To Acheive But We Can Hope" basket and by some bloody miracle she was out of nappies by age five. We are yet to crack night time dryness and that remains in the aforementioned basket but so far it seems that too, may one day be possible. And in the scheme of things night time nappies is no big deal for now.

But when it came to getting "off tube", that goal was up there with her body spontaneously and independently developing an enzyme to metabolize glycine and her waking up one morning with her DNA rewritten and she'd be miraculously be cured. In short, highly fucking unlikley.

And even on my stupidly optimistic days when I let myself dream the impossible dream, my thoughts would wander to Alice maybe having a few licks of ice cream at the beach as a teenager or me putting some butter icing from a birthday cake on her lips and her, maybe, finding a way to get some into her mouth and swallow it without choking. But that was it.

Eating a full meal? Absolutely not.

Eating a food that involved actual chewing? Not in a million.

Drinking a full cup (half a cup, quarter cup, 2 sips in succession) of any fluid? When hell freezes over.

Taking more medicines in a day than you can possibly imagine? Enough already, stop with the crazy talk.

As such, the prospect of getting "off tube" was a firm Never/Not Gonna Happen situation.


Well yeah, I got that wrong too. Its a long boring story but out of the blue as Alice approached her 3rd birthday she began sucking the salt off of French Fries. Nothing more dramatic than that, but that was the point everything changed. After that we found cold food was her thing and I realised that she'd only eat if she had total control. If I tried to feed her she'd flat out refuse, so I froze everything and put it on sticks so she could do it herself. Custards, yoghurts, pureed fruit, rice pudding and I'm pretty sure I even froze savory stuff at one point but she made it quite clear what a stupid idea that was. Who on earth eats frozen soup anyway?


What followed were about six months straight, of us barely leaving the house and my entire focus being on trying every possible combination of foods and consistency's and temperatures and delivery methods to get Alice fully eating. Eventually she did allow me to feed her things like puree and soon she progressed to thicker mash, which of course ment she now had to learn to use a spoon. Suddenly after almost three years of no progress whatsoever in being orally fed, she was motoring through the stages faster than I could keep up. To this day I'm every so slightly proud of the fact that her Speech Therapist said she'd never seen anything like it. That in all her years of therapy, she'd never seen a child with zero feeding go to where we were in the time we'd got there. She even showed me our 1 year and 5 year goals for feeding on the previous years Action Planner and it consisted of sucking on an ice lolly and sipping water. That's how low Id set the bar based on where we were just a year before.


But whilst eating came fast and relatively easy to Alice, drinking did not and we didn't even bother tackling the task of taking meds by mouth. No NKH kid, to the best of my knowledge, has ever gotten rid of a tube once fitted and even if they do learn to eat, I know of only one who has then gone on to take meds by mouth. That "one" I talk about is one in the world, not in Australia. One other girl with NKH on the entire planet has achieved this goal. So being tubeless remained in the dusty archived file of "Simply Not Gonna Happen".

It took several years for Alice to drink more than one sip at a time. I'm not sure why but it was like her brain couldn't do a quick repeat of the action, so one sip was fine but the second she'd inhale. The brain is a funny thing and I've learnt in my years raising Alice that doing a task once is one thing but repeating it quickly a second time is a whole other skill. If you are fortunate enough to have a normally functioning brain its almost like it can just hit a "repeat" button, but in NKH each and every action, every micro action, involves individual thought and planning and concentration. So this glitch in Alices Matrix ment that whilst she'd sip single sips of water continually, throughout the day, it wasn't anywhere near enough to flush the toxins from her body or to hydrate her. And it certainly wasn't enough for an active child in a hot Australian summer. That said by about age 7, we had drinking ticked off the list too.


It was another 18 months before I even allowed myself to think maybe, just the teeny tiniest of maybes, that we could get Alice to take her absolutely vile tasting meds by mouth. She was 8 and a half by this time and cognitively smart enough to know a few things about her condition. She had worked out that her tube made her different. She also knew she had a thing called NKH but only that it makes her "wobbly" and "angry", but best of all she absolutely understood that if she didn't take her meds she would get sick. With this in mind I decided I had nothing to loose by simply asking her if she'd try it. Not really expecting much of a response or understanding I had a chat with Alice and explained as simply as I could why I needed her to try and swallow heaps of syringes full of meds that make grown adults spew with in seconds (yes its a fact, yes all NKH parents try them, yes we all puke) and that if she would like her tube gone, this was her only chance. As is so often the case with Alice, she surprised the hell out of me and simply agreed, and said it was a "good idea".


For the next few months we tried every conceivable way of disguising the taste of her medications. Not just in what I was hiding them in at home, but this is in addition to the flavours and syrups that the pharmacist tried to hide them in. Nothing worked. In fact both me and Greg also tried all the meds and agreed they were indeed utter shite and no way would we force them on Alice.

It looked like we had no choice but to keep the tube and just use it for meds. We'd come so far but fallen at the last hurdle and I was actually a bit annoyed at myself for even thinking this might happen.

Then when all hope seemed lost and I was moaning to the pharmacist that we'd run out of options, he said "Why dont you just try her on a tablet? You never know". So I did. And she bloody did it. I knew it was a fluke so we tried again and she did it again, except the this time she demanded I clap after and shout "Go Alice". So I did.


And thats where we are now. All food is eaten by mouth. My God does she have an appetite and we are yet to find anything she wont eat. She drinks heaps of water each day and she takes anywhere from about 10 to 20 tablets a day, depending on how her NKH is going, what supplements shes on, if she needs pain relief or antibiotics etc. All being well Alices tube will be removed this side of Christmas and apart from all the tell tale key hole scars that pepper her tummy and the fairly large mark that will be left where the actual tube sat, my girl will have a normal, flat, smooth, petrol cap free stomach. And I have come full circle back to 2012 when I first saw her after the surgery. Where I was angry that she'd been marked and cut to fit the tube that would save her life. Where I was annoyed that surgeons would do something to her that ment she'd couldnt run across a beach wearing a bikini and where I then berated myself for assuming she'd ever run on a beach let alone do it in a two piece swim suit.

Turns out my ridiculously far fetched random thought, that I perceived to be blind denial, wasn't actually so far fetched after all. Perhaps it wasn't even a thought. Perhaps it was a vision......


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