Alice recovered from her surgery remarkably well. She didn't have any seizures, she had no issues with her breathing, she came round surprisingly quickly and was apparently unphased by her new Cyber Stomach/Robo Gut. I even made a doll with a G Tube to help it all feel more normal for her.
But of course it wouldn't be a trip to the hospital without at least one medical fuck up and true to form someone didn't do their basic medical requirements yet again and as always Alice paid the price.
It had been decided that whilst Alice was having her G Tube fitted, the surgeon would also perform a Nissens Fundoplication on her oesophagus (please see Part Two of this series for an explanation). However the surgeon, who had only met Alice for five minutes before her surgery, had no part in her day to day medical care and had never so much as laid eyes on anyone with NKH before, decided in his infinite wisdom that he was better placed than her parents and medical team to decide what was best and as such, didn't bother with the Nissens because he doubted she needed it.
I wrote another post recently about the medical fuck ups we have encountered over the years and in that post I listed a few, but I also stated that there were too many to mention. Well this was another glaring example of what we deal with on an ongoing basis. The upshot was that not only did we still have a child who puked up life saving meds after every feed, but she would now need a second surgery, another anesthetic and all the dangers that come with sedating an NKH child, more keyhole scars, more stitches, more recovery time and the family would be split again for another hospital stay. On top of that we'd have to re join the wait list to get it done and in the meantime we have to hope Alice didn't aspirate from all the spewing and that we could keep enough meds in her to ensure she stayed seizure free and conscious.
It took another 3 months to get back into hospital and go through the whole procedure again. Ironically it was with the same bloody surgeon and when we were talking in the recovery room he actually had that nerve to tell me that he was amazed at how slack the structure of Alices throat was. Apparently he'd seen nothing like it before, he was amazed any food had ever stayed in at all and how she'd really benefit from the wonderful job he'd just done. Really? Are you shitting me? He then spent half hour telling me how intelligent his kids were. I felt like saying "my daughters prognosis is two years of life with the expected mental capacity of maybe a three month old, but hell yeah I'm interested in what University Grades your kids got. Tell me again why the fuck we are even here today having a surgery we didn't need???" But I didn't. I just smiled and sat with the realisation that my already poor tolerance for fuckwits, was getting far worse by the day.
In the coming months the tiny amount of eating that Alice could do (still no drinking at all) fell away completely and by not long after Alices first birthday she was entirely tube fed. The puking was still a massive issue but because her surgery prevented her from physically throwing up it now just ment that anything from two to six times a day she'd begin to make retching noises and jerk her head forward like a cat trying to reverse off a fur ball. She'd go purple and her eyes would water and I'd have to hold her in my arms as she gagged hard against the knot in her throat. It was truly awful and it was several years before this heartbreaking process stopped completely but finally her meds were staying in, she was gaining weight and the threat of aspiration pneumonia was one less threat in our long list of threats.
For the next two years Alice was kept alive and out of hospital thanks to her tube. She was fed and hydrated entirely via her little plastic petrol cap and for that we were eternally grateful. We even developed an odd affection for her tube, it was quite literally a life line. When Alice was too ill to even wake, we could still feed and medicate her. NKH kids can literally sleep for days at a time when ill so to be able to just change nappies and do all her food and water while she slept was a life saver. When she was sleeping at night we could give her 10pm and 3am meds without waking her and of course we never had any issues with her refusing the disgusting meds.
Initially she was just fed formula because as a parent of a tube fed kid you are not allowed to put real food through the tube. Nope, I'm not kidding. Its a little known fact but you are not allowed to feed your child "real food". These kids are expected to live on the equivalent of powdered soft serve ice cream (with added vitamins) and you are expected to deal with the arse end results of a toddler on nothing but pints and pints of formula and medications. Yep really. And they wonder why disabled kids don't thrive and are plagued with gastric issues. But hey what do parents know about whats best for their offspring?
In New Zealand when I first told the dietitian I wanted to start a real food blended diet via Alices tube, I was given a side glance that appeared to say "Ssshh we don't speak of that here. We need to talk where we arn't being monitored". In fact it turns out that kind of was what she was trying to say. When no one else was around she took me to her office on the pretense of collecting some syringes but when the door was shut she slowly slid a book across the desk while keeping one eye on the door. Like something out of a Russian Spy movie she explained that whilst she was in no way condoning I do something as radical and irresponsible as feed my child real food but if I was to choose this errant path, then this book may help. But I didn't get the book from her, if you know what I mean, nudge nudge, wink wink. Neither of us ever spoke of that conversation again.
What followed was a relatively good period of health, less vomits/gags, better poos, brighter skin and eyes and less screaming with agonising gut pain.
When Alice was 18 months old we made the move from New Zealand to Australia and I had no choice but to go back to a diet of Vitamin Fortified Mr Whippy as her only source of nutrition. Its near impossible to sustain a carefully balanced and nutritionally complete blended food diet when you are flying, staying in hotels, short term rentals and all your stuff is being shipped from across the continent. But my god did we pay the price. We were instantly back to purple faced, watery eyed gagging episodes and relentless nuclear grade nappies and farts that took the skin off your eyeballs.
Five months later when we were settled in a home of our own and all our stuff had been shipped over, I jotted down an email to Alices new dietitian at the Childrens Hospital requesting some help with re starting her blended diet. She was almost 2 now and her nutritional requirements were ever changing, so I wanted to make sure I was covering everything she needed. To my utter astonishment I received a reply stating that under no circumstances was I to feed Alice real food and if I did so I was at risk of Protective Services getting involved (if they chose to grass me up) and unless I would assure them that I wouldn't do something as careless as put homemade soup through her tube, they would have no choice but to remove me from their client list at Princess Margaret's Childrens Hospital . It went on to explain that apparently tube fed kids (ie normal human beings) must only have formula, because real food involves hygiene risks. What the actual fuck? Also a blended diet wasn't as nutritionally balanced as formula ( ie powdered McFlurry with synthetic vitamins) and with real food they couldn't be sure she was getting everything a two year old needs.
Never wanting to miss an opportunity to let my true feelings be known and point out the painfully fucking obvious, I swiftly replied with the folllowing points:
* If I could be trusted to be hygienic enough to safely feed my orally fed child then surely I could be trusted with the feeding of my tube fed child. Despite what they think I didn't feed one in a kitchen with washed hands and the other in a kennel in the garden with a rusty spoon.
* I provided documentary evidence to show that formula for disabled kids was near identical to the ingredients in powdered ice cream but with a few additions. I then asked for their thoughts on the administration of this liquid shite as a complete form of nutrition if it was their child.
* I pointed out that when Alice had blended food, her daily diet consisted of things like broccoli, kale, cabbage, carrots, sweet potato, lean chicken, fish, rice, quinoa, banana, blueberries, mango, organic dairy and coconut water. Could they tell me how that compared nutritionally to the average diet of buttery toast and tomato pasta being eaten by most two year olds?
* And finally I told them that they really had no right to call themselves "Dietitians" if their job was to simply advise on calorie intake of liquefied soft serve. Oh and they could go ahead and remove me from their client list, lubricate it and shove it up their ass.
OK, so I didn't actually say that last bit, but I did tell them to get stuffed because I didn't want their help. And that was the last time I had any dietary support with Alice, seven years ago in 2013.
For the next year we chugged along with a blended diet, which I navigated completely unassisted by "professionals", using only Facebook Groups for help. If I remember rightly, by this stage we'd manged to get her onto a medication routine of four times a day and a feeding routine of the same. Which sounds pretty easy to manage but each feed and meds session would take at least an hour. If she had a gagging episode it would be about 90 minutes in total. The prep involved with measuring out 20 plus doses of meds a day, four food blends and of course all the clean up of tubes, syringes, blenders, bottles etc ment that one session pretty much piggy backed onto the next. Try to fit in housework, showers, therapy appointments, hospital appointments, a walk in the fresh air (if I was feeling crazy and reckless!) and of course I still had a four year old at this point, and I can safely say I wouldn't go back to those days for all the sodium benzoate in the pharmacy.
To be continued.........