July 18

 An exciting phone call came this afternoon! Brian's doctor called to let me know that Brian was able to open and close his eyes on command! She said that it took a lot of work getting him to do it. She and his nurse were yelling at him for a while to get a response, but it finally came. I can only imagine how annoyed he was to hear two people yelling at him to open his eyes and probably wanted them to leave him alone so he finally did it to get them to stop! His doctor thinks Brian is very weak at this time but is feeling more optimistic about Brian's potential progress. She was not very optimistic yesterday when I was there while she was talking about expected brain injuries. Of course, it will not be known how Biran is doing neurologically overall, until much more testing can be done, but this was a big step, just knowing that Brian is still there. 

Brian's bilirubin count is up to 15 today. His doctor said that she consulted with a GI Specialist about what might be causing him to continue to have elevated numbers. The GI Specialist thinks that it might have something to do with the IV nutrition he is receiving. His numbers started climbing when he was too sick to handle the feeding tube. Everything that was going into his stomach was not digesting and ended up being pumped out. As a last resort to make sure that Brian would get nourishment, they went to IV nutrition. They are now thinking that the IV nutrition is somehow affecting his bilirubin numbers. They are going to try and shut off his IV nutrition for a few hours and then put it back on for a few hours to see if it helps and maybe he will be able to handle a feeding tube by next week.