I really think we live under a black cloud sometimes! So after I updated last night we noticed that the bottom of Alex's incision was red. The nurse called the on call doctor who "poopooed" us and didn't even come look at it. I pointed it out to our pediatrician this morning and he was immediately concerned. This set off a chain of events. Where numerous people came in to look at it. The bottom line is that Alex has cellulitis (a bacterial infection) and a possible abcess. We are starting one of the two antibiotics we know we are okay with. If it does not improve or gets worse in a few days they will have to go in and drain it. Alex is okay as long as no one messes with it. It is very painful if someone touches it, but is okay otherwise. I also took the opportunity to talk to surgery about his leaking around the jtube. They said this is not normal, but they see it in people with severe motility issues. They are considering ordering him a special paste usually used for ostomies that should help protect his skin.
The pediatrician and I did make the decision to go ahead with feeds as planned. Unless the abcess needs to be drained or he gets "sick" from the infection we will trudge along. We started about 2 hours ago and seem to be doing okay other then some increase in the leaking.
Once again we ask for your continued prayers as Alex continues to shine brightly even with all the struggles he endures. His smile and giggle can light up a room and certainly my world.