Day 97

As I typed the title to this post- Day 97- I cringed a little. We're about to hit the triple digits in days, and that's enough to depress me on this Saturday night. We seem to be in somewhat of a holding pattern, repeating the same things day after day. Of course, Holden is still throwing up, and he's still on oxygen. (I really hate typing that line over and over again... I'm ready for a new one!) The only good news in all of this is that he is managing to gain tiny bits of weight... He's on an elemental formula now, so he's absorbing the nutrients more quickly even when he throws up his feeds.

We've had to decrease his diuretics because he's dehydrated and his kidney numbers are starting to look bad again. His lungs are still wet, so decreasing his diuretics won't help that situation out at all, but we don't really have a choice. We'll just have to circle back around to his respiratory issues once we get a handle on the digestive problems. (If we ever get a handle on them.)

The GI team came back in to consult today, and they're just as stumped as the rest of the doctors. Apparently we've already tried everything they would recommend, and they don't have much left in their bag of magic tricks. Any other tests/procedures they could do would be invasive, and the cardiac doctors have vetoed anything involving anesthesia unless absolutely necessary. We may soon get to that point, but for now the risks aren't worth it. So we've added a new med, an antihistamine, that may help. I won't even pretend to understand how an antihistamine works on intestinal motility and vomiting, so I'll leave that part to the doctors. I continue to pray that they'll find something, anything, that will work for him, but I can't get my hopes up too high anymore. I hope someday we'll be able to look back on this and not even remember how hard it was, but we're not there yet.

His withdrawl seems to be better under control now, since we've stopped weaning and changed his methadone and Valium to IV. The pain management team thinks that in addition to us weaning the doses, he was also self-weaning by throwing up his meds, and that creates a scary cycle. He seems to be doing much better on the withdrawl front now.

I'm sorry to have kept everyone waiting on an update, but we've been having issues with the laptop. You can thank my cousins Jack and Jennifer for this one, because they brought me their laptop to use while they fix mine. They also brought bags of goodies for us and stayed to visit for a while... Jack attempted to take apart my laptop in the hospital room, but the job was a little more complicated than he anticipated. I would be going through internet withdrawls by now without their help. :) We are reminded daily how incredibly blessed we are by our amazing family and friends!

I'm sure everyone has big plans for the Super Bowl tomorrow, and I hope everyone stays safe in the nasty weather. Holden doesn't care who wins, but he'll be forced to watch the game anyway. You have to start them young. :)