Our last post was a week ago, and it seems that the days since have flown by in a haze of hospital beeping, interrupted nights, and bad coffee.
The short story? Nothing to report. Output is still high and we are exploring options for long-term treatment since nothing seems to be making this go anywhere anytime soon. Today marks 1 month in the ICU, though technically James has been here 32 days, and with no end in sight, we could have weeks or months to go.
The longer story: James is now on a no/low-fat diet, so we've been testing out food this week. He had a great day eating yesterday, but couldn't keep anything down today. (Solution: add a new med.) He has barely been sleeping. (Solution: add another new med.) His heart rate has been high ever since his atrial flutter episode last weekend, and docs are trying to slow it down (by adding a new med). Each med has its own side effects, including nausea, insomnia, and elevated heart rate, which circles us back to the beginning of this paragraph...
As a result of much of the above, folks here think James may be suffering from delirium, a common psychological condition that affects people in long-term hospital care. It would explain the poor sleep and his increasing agitation. (Mommy and daddy are pretty sure they're also beginning to suffer from delirium at this point, and they're only being partly facetious...) We've already started advocating for home care, or moving to a clinic closer to home, because we all know that James' crazy cornucopia of conditions will clear up faster in a familiar, happier environment...
Still, many mini-positives to note: James is still improving on the walking, and has made it all the way around the PICU now, albeit with many tears and complaints. He's been cranky a lot lately, because, of course, he's tired, but we've also caught him singing to himself and singing along with his playlists and videos. He has been coloring and using stickers a ton and is apparently ambidextrous now after having spent so long with his right hand out of commission. He is even starting to help the nurses, lifting his arms and offering his i.v.'s for temperature and blood pressure and other checks.
We had lots of toys and activities prepared to occupy him while stuck in bed, but we hadn't anticipated a month and more, so we're starting to cycle and recycle through things at home. Of course, we're starting to think about what else we can do now because kiddo is starting to get bored!, so if any of our faithful and creative readers have any brilliant ideas, please share away.
We are all so ready to go home...
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