Sebastian part 2

Still getting pneumonia's, still admitted to the hospital a lot................he was a mess !! We were inpatient for most of the summer of '06, first an NJ tube was placed, bypassing the stomach. Even though he was not taking anything by mouth, with the G tube feeds he was still refluxing severely and aspirating the reflux, so bypassing the stomach eliminated that problem. He had a Nissen Fundo done in early August and after 24 hrs of rest, tube feeds were very slowly started.
That was a mess !! Within hours he developed "loose air under the skin" going from a small goose egg on his ribcage to his whole upper body, front and back. Picking him up, he would crackle under your hands like a bag of chips.......................

He ended up on TPN ( IV nutrition)for weeks, he was not tolerating any G tube feeds. Papa took a whole month off to stay home and take care of the other kids, while I was in the hospital with Sebastian, who was a mess. He had a broviac (central line) placed for his TPN (yet another surgery) and I was trained on mixing the TPN, taking care of IV's, etc.
After over a month in the hospital, the dr's were ready to let him go home. I would have to come every week for weight checks, but everyone felt he would do better at home. One big hurdle............legally this child was not mine................
The Coalition had a PowWow and decided that the liability would be too big and he needed to go to a nursing home....................................
That's when I lost it...................I had been strong, upbeat, we'll get through this, etc...............but instead of talking about a child, these A$$hats were talking about liability and nursing homes...........they never called while we were going through all this, and now this ??!!!
The dr's agreed it was ridiculous and he was kept inpatient. We all worked so hard to get him to a minimum rate on the tube feeds, where he could sustain himself, without IV's. Sustain, not enough to gain, just enough liquids. We were finally released early September'06............................
He has had a bumpy road, some more diagnoses are tacked on the list every once in a while ( partial complex seizures, mild CP, expressive language disorder, etc) but they don't faze me anymore. I know that Sebastian is a strong little boy who has overcome a lot already, amazes me and lots of others every single day. He has come a long way and the sky is the limit !!!!!!!!!