Day 79

It's been a very pukey morning here. Holden's been throwing up even more this morning, and the new formula they were trying him on (Progestemil) stinks to high heaven. It doesn't smell like formula, and I can't even describe the smell. Fortunately, they've switched him back to another formula that smells more like regular milk... He's going to throw it up regardless, so it may as well not be awful. It's a small thing, but those small things make a difference in here.

We spoke with the surgeons earlier, and they feel like the benefits of doing the surgery on his intestines aren't worth the risks when it comes to his heart. The surgery will need to be done at some point, but if we can wait until after transplant, his odds of surviving it increase. One of the surgeons said that he may not make it through the surgery at this point. I don't know if she was just being melodramatic, but we don't want to take any chances that aren't immediately necessary. Besides all of that, we're not even 100% positive that the malrotation is what's causing all of his problems to begin with, so the surgery may not even fix him. The final call hasn't been made yet, but it looks like we'll delay the surgery for a while.

We tried to take him off of the oxygen for a little while this morning, just to see how he would respond, and his oxygen saturation immediately went down. So we still don't know why he's requiring oxygen when he wasn't before, but we do know that he'll be on it for a while.

We're calling around to some of the doctors we've dealt with in the past, trying to get some second and third opinions. I don't know if frustration is getting to us and making us impatient, or if we're justified in thinking that more can be done... I hope that this week brings big changes for Holden, for the better. I can only pray for guidance and wisdom for his doctors at this point...