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If I had a £1 for every time I was asked that question.
Well, I'd be able to fund a short weekend away probably.
It's a question I don't mind being asked. In fact these days I love being asked questions.
It's a chance to normalise what is already so normal to us, and a chance to raise awareness.
It is a question I now respond: "My main aim is for her to gain weight, be hydrated, and be comfortable." Only people like us can fully appreciate what I mean by that.
There was a time when I'd give my limbs for her to be able to eat, I still have moments of grief when I see a mum and daughter in a cafe sharing a cheeky slice of cake.
But now? I would like her to not require 24 hour tube feeds. It is absolutely soul destroying at times.
I have known people say "well what happens if you just don't feed her? Then she'll have to eat."... Well no, Doctor Stranger, it isn't always that simple.
There are more reasons why someone might require a feeding tube than you ever might think. There are also more types of feeding tube and ways to be fed than I ever thought possible.
Once you have a tube fed child you eventually end up picking up a language you never knew existed, you can have full conversations with a fellow tubie parent that would leave others baffled.
"Have you tried bolusing feeds via the G or do you need to leave it as a continuous pump feed? We have problems with occlusions on this new feed, it's these silly new connectors on the giving sets. Since having the GJ though we've been able to do free drainage and increase fluids via the g" (A probably genuine conversation I've had)
Those of you who have followed Amy's journey will know that our issues regarding feeding has been far from simple. Initially Amy had an NG tube... she was born unable to swallow.
This is when the severe GERD (reflux) diagnoses began, shortly followed by a huge cocktail of various meds.
The bolus feeds stopped (gravity feeds via syringe) and were promptly replaced by Mr Abbott (my name for the feeding pump).
The NG tube was replaced by a gastrostomy and fundoplication.
The relief we felt not having to constantly aspirate test (checking ng tube was in the right place, i.e. not in her lung), not having to repass the tube, not spending my days begging for more duoderm and cutting new pieces when the old ones came off.
The fundoplication surgery failed after a few months, it was devastating.
Even though I had done SO MUCH research I hadn’t yet discovered that fundo fail rates for SNI (severely neurologically impaired) children was significantly higher.
A PH study showed that Amy's reflux was only mildly abnormal. Something I had suspected for a long time, I knew... KNEW... that her feeding issue is digestive i.e. gastroparesis, dysmotility.
I am now more vigilant than ever in trusting my instincts... you can have all the medical knowledge in the world and have encountered the most complex of patients, but there really is something to be said for parental instinct.
I am not disputing that reflux is not an issue, but more that something more is happening that is making food a big issue for Amy.
A PEG-J was inserted. We wondered if bypassing her stomach would aid digestion. It did not. It was near impossible to get meds in. She was in pain. It was awful.
I shed so many tears knowing that I am the reason she had this. I fought and fought to trial that tube.
Amy gets about 650 calories a day... with her type of cerebral palsy she needs minimal 1200 but possibly 500 more due to her constant movement.
We now have GJ button (gastro-jejunal/transgastric jejunal). It has two ports. It is amazing. We can do meds, extra fluid and drainage via the G port, and continuous feeds through the jej.
It is amazing. For the first time ever we have been able to increase her feed rate and her not bloat or need constant drainage. There has been no retching. No scares, no aspiration. Wow.
The downside? Every 4 months/when it fails we will need to go to our city hospital and Amy will need sedating and taking down to radiology for the replacement.
Before this I could just do a tube change no problem. It is disheartening. I am also told this may not be a suitable long term option. She may benefit from a separate jejunostomy.
Most tubie parents will tell you that stoma management can be very tricky. Over granulation, leaks, sores, all sorts. You will see pictures on forums whilst eating your tea that could make others faint.
In addition to the GJ she also needed surgical dilation. This is not for the faint hearted to watch, I almost fainted.
It saddens me deeply what she has to go through, and I hope she understands that we are not out to torture her but actually want her to thrive.
So yes. She will always have that tube. Even if she learns to eat. She will still have that tube.
Every time I think how much I hate the tube I am reminded that without this incredible piece of medical intervention, she would not be here, and that doesn't bear thinking about.
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