I’m pleasantly surprised, though hesitant to get excited naturally.
Mid morning I received a message from the feeding school with a suggested new regime to start the process. I looked it over and noticed lunch and dinner reduced with a short amount of dinner and the same for his overnight feeds. It wasn’t what I expected, it was drastic but softly drastic. I knew it wasn’t going to instantly starve him but I thought when cutting down it would be removing for example breakfast and working on his hunger in that time. Instead I was to reduce breakfast and lunch by half, dinner by a little and overnight feeds too.
It was a relief to read in the message the paediatrician asking me what I thought, if I was happy to go forward with the suggestion and also if there were any restrictions in reductions from his home paediatricians. I was glad she asked as although I was about to respond informing them that Jaxon needed a minimum of 1500mls of fluid a day for his kidney function, the fact she had noticed his large water input and questioned it made me feel at ease that it was not confrontational or them vs us and instead understanding and care that would involve myself, his regular professionals and the feeding school team equally.
I responded explaining his fluid requirements for his kidney function and she explained that the reduction left him with around 1100mls so we would be aiming for Jaxon to orally take the 400mls to make it up. I hadn’t thought of this in my panic. I had in my head that he needed his 1500mls regardless of what we were planning for his feeds. However, I was curious. Jaxon has been known to drink water. Not very well or with great technique and only when clinically dehydrated but its a spark of hope right? With a target it felt possible.
Jaxons lunch normally takes from 12pm-1pm so given the suggestion of a half feed I assumed I should give him the half feed at the last half of his feed time so the first part I could offer him the opportunity to try foods orally. In the past this has led to anger and upset with food thrown, screams to tell me he has no interest and visible frustration at the suggestion. The past few months Jaxon seems to have developed past this stage and has been less aggressive with reduced casting behaviour. Today I gave him a bowl on his table with small pieces of buttered crackerbread, bacon, a cheese flavoured crisp, scrambled egg and two pieces of pasta. Whilst he did not swallow any he blew me over as he tasted, licked and explored every item with his hands and tongue. He has always been cautious of food, almost defensive against it but today he was interested. I could see him looking at the choices, inspecting them and bringing them to his mouth with his tongue stuck out to lick them.
The thing I can’t do with Jaxon is offer him food. I can’t put food on a fork or spoon and hold it to his mouth. If I do, he bats the utensil away. He point blank refuses. He will grab the fork out of my hand and throw the utensil and food to the floor. If I approach his mouth with a spoon of liquid he will shake his head, cover clamp his mouth closed, put his hands over his mouth and when strike out. Jaxon has to be in control. So at this point, all I can do is put food infront of him and hope for the best.
I’m curious as to how the nights will go with him on reduced feeds. Will he wake hungry? Will he sleep through as he still has the sensation and the sound of the pump? He should have less nappies with less input which would be great with the threat of carers being removed but our experience of reduced nappies is a low urine output due to dehydration. Will he meet his needs on his own?
So many questions. So much hope.
I’ll keep you updated.