In the last Feeding Tube blog I said that our plan was to have her tube removed by Christmas. The reason for this time scale is because we are awaiting a hospital admission for a few standard checks. One is a full blood screen for amino acid levels and to see where her glycine in particular, is tracking.
In the early days this was done monthly and for many years more, three monthly, but as Alice grew in size and awareness of her world, these blood draws became increasingly traumatic for all involved. The final straw came at about age 4 or 5, I cant remember exactly, when it took myself and four nurses to hold her down, while she screamed "Please help me Mummy. I'm sorry, I wont do it again, please stop". If that alone wasn't enough to rip my heart out and destroy my soul, it was then being told they couldn't even get any blood out of her veins as she was in such a state of panic that her body was pulling all her blood back to her organs. Turns out if you go into an abject state of fear you can't effectively draw blood as your Flight and Fight Response is so intense that your blood vessels constrict.
It was after that incident that I put my foot down and refused to continue with blood draws, declined the 6 monthly X rays to monitor her hips, I dropped all unnecessary clinic appointments and refused to put her through anymore EEGs. I decided that Alices mental health was far more important that gaining statistics simply for monitoring purposes and telling us things that we already knew ie glycine will be high, iron will be low, hips will be out of normal ranges but nowhere near bad enough to do anything about it and her EEGs will always show slow brain waves but no seizure activity. As a result of that we now only check her blood if shes fully sedated and that happens about once a year when we can combine any other checks that need doing like dental check ups, brain scans, X rays, CTs, MRIs and so on.
So the plan for the next sedation was to check bloods for amino acids and a whole host of other things, do a quick dental check, have a gynecologist do a proper exam to make sure the famous Beargina Incident of 2020 (for a full explanation, please refer to the blog titled Intimate Injuries in The Lockdown Series) hasn't done anything serious and to have her tube removed and a stitch put in the hole where it has sat for the last 8 years.
Now in theory you don't need surgery to remove a G Tube and you don't need a stitch, you can simply remove it at home and the stoma (hole) will apparently close on its own like when a piercing is removed. Whilst that might sound a bit full on for a parent with no medical training to do something like that, you have to remember that parents of kids with these tubes have usually been removing and replacing them every few months for years and years. So they are essentially doing nothing they haven't done many many times before.
In the end we gave up waiting for an appointment date for sedation and just took the damn thing out ourselves. Alices old tube was due to be changed, she was asking almost daily when it was getting taken out and frankly, both me and Greg were so eager to have something as normal as a child you can grab and hug and dress and play fight, without constantly having to be careful you don't catch and yank a hunk of plastic from their stomachs, that we thought "fuck it. We need to remove this one anyway, so why upset her more by putting a new one in that won't ever be used"?
So we took it out. And just like that it was gone.
Eight years of her her nine years of life she'd had this gateway to her stomach attached to her skin and prior to that she'd had an NG tube up her nose and taped to her face from 11 weeks old. Which means that I have only ever had 11 weeks of my beautiful daughter without some sort of medical equipment attached to her. Now I'm fully aware she is not "normal" on the inside but with nasal tubes and gastric tubes its meant she has also almost never been "normal" on the outside either. She cant wear dresses because they could rub and irritate the site or the tube itself makes an unsightly bulge. Worse still was back when she used it all the time, you simply cant lift her dress up to her armpits to feed her in public or give her meds. No one piece swim suits, no play suits or jump suits, every thing had to have front access and not press against her stomach because as anyone familiar with a G Tube will tell you that rubbing means granulation tissue (Google it, its disgusting) which means pain and oozing and medications and sometimes more surgery.
But now its gone. I can grab and hug her at will without fear of hurting her. I can change her t shirts in a flash without pausing to make sure everything is clear, I can buy her any damn clothes I/she wants and for the first time in almost 9 years she has no outward physical signs of the chaos and dysfunction goin on inside her body and brain.
But of course nothing is ever straight forward in our world and as Id feared all along, at two weeks since removal the damn hole hasn't closed at all. Nothing nasty like stomach acid is seeping out but when she drinks lots of water it is, and much to Alices delight if she contacts her stomach muscles she can make it whistle by forcing air through it. So she's leaking water like a tap with a dodgy washer and shes whistling from her stomach like an stove top kettle, which would be far funnier if I now wasn't panicking about what we do if the sodding hole doesn't close.
Once again it just reminds me that despite being assured multiple times by various medical staff that it "will close with in hours", that I should trust my own instincts and listen to the families who've been there.
So that's where were at. Tube free, elated, ecstatic, still a little in disbelief at the enormity of what we have achieved and waiting for a call back from Perth Childrens Hospital about whether a child who can whistle out her stomach is cause for concern or not.