The upper GI has been done; now we are waiting on the surgery. It should be done today; we have seen so many of the surgery team that I can't imagine they wouldn't do it. We are at a little bit of a standstill right because of some blood work. They want to make sure his blood is clotting correctly before surgery; unfortunately he has been stuck so much that there is no place left to draw from. They have even called in the pedi transport team to look and there weren't able to find anything either.
The nurse from the Butterfly Network (children's hospice) should be by in an hour or so to meet with us and get that established. We should also meet the doctor from the CHOSEN clinic when he does rounds....unless Eli is in surgery. We will hopefully get an appointment soon to go to the clinic since we had to miss the one we had this morning. I'm pretty worried about Eli. He seems to be getting much worse and the SMA symptoms more and more pronounced. I want to get him home so we can take some time to enjoy him.