I tried to update last night, but my internet was down!
I think yesterday was the hardest day I have had since being inpatient with Alex all these months. Dr. Koenig came in yesterday morning and told me surgery plans had changed. They did not want to do the J tube or remove the gallbladder. Instead they wanted to do a surgery where they icrease the size of the opening between the stomach and small intestine. I was not comfortable/in agreement with the change in plans. I spent most of yesterday in tears. I want more then anything to get Alex back on formula and off TPN. I feel like the best chance of that was the original planned surgery. The surgeons were adamant that the J tube surgery is not a good option. There are a number of possible complications and long term risks. As for the gallbladder although he still had significant sludge and small stones, they were hoping he just needed more time to clear after the sphincterotomy done during the ERCP. After Dr. Koenig coming back a second time to talk to me/console me yesterday, I was okay. I at least understood the reasoning behind the decisions. However, I was unhappy with the thought of a possible second surgery within a few weeks if this plan did not work.
I was shocked when a little while ago GI came by and told me Alex's gallbladder is coming out! After having a meeting with our GI, the adult GI (pancreas specialist), surgeon and Dr. Koenig, they determined that this was for the best. Alex's anatomy was very small inside and the adult GI does not think the gallbaldder will clear even after the sphioncterotomy.
So Monday Alex will have the pyloraplasty (opening of stomach/intestine junction) and gallbladder removal. I feel much better with this plan. Now to just get through the pain of next week!
Today was our Fun Run and it was a good experience. the walk had 800 participants. It would have been much better if Buggy could have been with us.
I leave in a little while to go get Mom. I don't know who is more excited me or Alex. EVERYONE here knows Mimi is coming.
I will update tomorrow.