Day 127

Once again, I have an overload of medical information to share, and not much good news. It's been another rough night and day around here, with Holden still uncomfortable and pitiful. He doesn't want to play, smile, drink, snuggle... Nothing really makes him happy. Of course, if I were in his shoes and hurting the way he hurts, I can't think of much that would make me happy either.

He's not as sleepy and lethargic today as he has been the previous couple of days. His glucose was really low, so he got some extra sugars this morning. That seems to have made him a little more awake and alert, although it hasn't made him any happier. Maybe he would have preferred the peaceful oblivion of sleeping his days away until all of this mess goes away. I wish I could make that happen for him. Honestly, I wish I could make that happen for all of us.

He hasn't been throwing up any more blood, and when I talked to the surgeon this morning he told me that he wasn't alarmed by the blood. As long as it's not bright red or a large amount, he's not worried until about a week after surgery. So while it's disconcerting, it's not alarming.

He was doing great from a respiratory standpoint, holding his sats up and moving good air in his lungs. The past 24 hours have brought a small backslide. He's still on high flow and high O2 concentration, but he's not holding his sats as high as we'd like. If he keeps rolling downhill, he's going to buy himself another stay on the Vapotherm. His xray was a little hazier this morning, but still not completely whited out. I'm hoping that it's just the fluid in his body affecting his lungs, and that we're able to get him to more stable ground soon.

He's started peeing a little bit more, which is good. He's not putting out as much fluid as we'd like to see, since he has so much built up to give, but any little bit is better than nothing. His kidney numbers are about the same- not great, but not getting much worse either. The doctors are pretty sure that it's his heart and not his kidneys causing the fluid retention. That's not the best news, but hopefully his heart function will improve over the next week or so. We started him back on one of the heavy duty heart meds that he was on before, and that should help his heart work more efficiently. If his heart starts to function a little better, we're hoping the rest of his body will follow.

We've been so worried about his heart, lungs and kidneys that we've kind of forgotten about the rest of his organs. It's hard sometimes to remember that he's a whole baby and not just a heart, but we got another reminder this morning. They checked his liver enzymes, and they are sky-high. The elevated enzymes are called AST and ALT, and they help measure liver function. Normal numbers for both are 10-50, and his are 2563 (ALT) and 3927 (AST). Not good. So we add something new to the puzzle, and have another organ to worry about. We don't really know why the numbers are so high, but it could be partly due to heart failure. Since most pain meds affect the liver, he won't be getting those anymore. The poor kid can't even have Tylenol now. :( If he gets to the point where he absolutely has to have something, we can give him morphine, but we're trying to avoid all of it if at all possible.

He's back to a 1A status on the transplant list again, mainly due to the heart med we restarted. The transplant team said that his elevated liver enzymes won't affect his transplant status, since it's probably a heart issue to begin with, and he's shown no markers for infection. Two of the doctors have told us today that all of this proves even more just how badly he needs a new heart. If I ever dreamed of his own heart recovering (which of course, I did), I've come back to reality now.

The only positive bit of news today is that the surgeons cleared him to begin small feeds through his gtube. He's not getting much, but he's on slow continuous feeds now. We're hoping that will help even out his glucose and energy issues, if nothing else.

So that's about all I have... I hope to have better news to post one of these days. For now we're just keeping him as comfortable as possible and praying for his body to get back on the right track. I know many of you keep him lifted in constant prayers, and I ask that you please continue. He's one brave little boy, but he's going to need a few more miracles.