We tried really hard to keep him home for Christmas, he was fighting and suffering since the tuesday before but was ok..but by Saturday it was clear that the pain meds were not enough. They had already increased the methadone that morning and told me try not to use the diluadid aaa much for fear of it making his episode worse.
We did dinner for the family that night, and presents for everyone except Santa gifts. Poor Zach wasn't even awake for more than ten minutes of it and didn't have the energy or interest in any gifts or family. By 9:00 that night (christmas eve) I was on the phone with his pediatrician, the pain was worse and he was really out of it. So we were sent to the hospital :(
Luckily we got one of our favorite nurses taking care of him and they started him on iv diluadid every hr as needed for pain. They did x rays and ultrasounds, but they revealed nothing. His gallbladder has developed some sludge but thatnis normal for being on TPN and no enteral feeds. His blood counts had dropped yesterday so he received a blood transfusion last night. They also were checking into his anemia conditions and for now have decided that it fits more with chronic disease anemia and he will just receive transfusions as needed for now. He could get iv iron infusions but they feel the benefits do not outweigh the risks right now.
As of today, he is really congested..he probably just picked up he cold that daddy had the week before christmas. He is also still puffy in his face and belly, still nauseous and has already thrown up a couple of times and still having breakthrough pain. The plan is for the dr's to call Pittsburgh and try and move him up there to finish evaluation and to help with pain/ vomiting control.