"Do you know how long he will need this?" Quickly followed by, "what exactly is his diagnosis?"
Well, we kind of have some answers now to both those questions. We had a genetic study done at shodair children's hospital and according to them he is "normal", the pediatrician when she heard this was and still is absolutely in shock that some sort of disorder was not found. So at this moment his "diagnosis" is...failure to thrive caused by severe oral aversions, dysphagia, and hypotonia.
His feed volume of formula has been decreased down to 500cal via tube and 450 h2o overnight and 500+ calories by mouth, since being on this feed rate/volume he maintained his weight over 6 weeks at 26lbs so at this point he will be on this until the gastroenterologist deems otherwise. The hard part of this is, and I finally got the pediatrician and GI to hear me not just nod thier head, I strongly believe and have said this since he was 6 months old that he has an absorption issue when his body has to break food down completely on its own. When I explained my reasoning they seemed to FINALKY understand.
My deductive reasoning:
Peptamin Jr (his formula) is a pre-digested formula, this means the proteins/nutrition are broken down already and it just has to sit in his stomach for a little bit and then it's fully digested. His body doesn't have to do barely anything.
While on 750cal of formula he gained 2+lbs EVERY month at his weight checks, he was eating a couple snacks on top of this plus dinner so he ate 150+ calories by mouth only. It was lowered to 700cal of formula and he was still gaining 2+lbs a month...so they needed to either taper off his weight gain or stall it or he could become obese...funny huh?
And now at his new volume he is consuming half his calories by mouth and half via tube and he didn't just taper off, it completely stopped. Just as many calories(1000+) daily, but his body is having to work harder to break them down. Again and I suspect that there will come a point to where his weight will swing backwards and we will loose weight or they will become frustrated with the stall in weight like they did before (stuck at 15.8lbs from 6 months to 16 months on over 1000 calories by mouth daily).
At this point they have heard my reasoning and whether they see it or not it will be at least 6months to 1 year before they will be willing to try and MRI or upper GI which are the next steps to figuring out an absorption issue. The reason being he has had a lot of anesthesia and x-rays and him being so little his body needs a break. And his drinking ability is the real clincher. If he wasn't at a stalemate with his progress, or had the ability to physically drink his 800ml need of fluids and formula then the feeding tube could come out. But right now the syringe is the only way he can take multiple sips safely but the minute he releases suction he loses control of the fluid and chokes or sputters. He also can only do it to at most 50ml at a sitting in 10ml segments before he gets tired and starts sputtering and choking during his sips.
We have a long way ahead of us, but like his GI said "at least you have a safe way to keep him stable and hydrated and this takes the pressure to perform off of him and you..."
