Long post, so here's the TLDR: The boys were moved out of the PICU and to the regular floor, and they're doing okay. We've been working on getting them out of the hospital, but we aren't quite there yet, and it could still be a few days. Details below.
William's continued presence here isn't a huge surprise -- sometimes, he just takes a while to get weaned off of the supplemental oxygen. He often finds himself on just a little bit of oxygen (a quarter to a half liter) and can't quite get off of it. That's the case again, and it's where he's been for a few days now. He's happy and giggly and mostly his usual self, aside from a touch of low-grade fever, so it appears that he's on a continued course toward getting out of here, even if he is a bit slow about it. If I had to guess, we're probably looking at another day or two.
John-Raven, however, has been bit of a puzzle. He was all set to be discharged Friday. In fact, the doctor had actually written up his discharge paperwork when we noticed his heart rate was up, he was running a low-grade fever, and he was lethargic. He just wasn't himself. We notified the doctor that we weren't comfortable with his status, and he canceled the discharge orders. We continued to watch him and let him rest. Over the course of the day, his heart rate leveled off, his fever went away, and he started acting like himself again.
Then came Saturday. We were hoping he would be better and get discharged. But when we got him up that morning, his heart rate was way up, he was running a fever (still low grade but higher than Friday), he was lethargic, and his oxygen sat levels were way down. We put him on oxygen and let him rest. Over the course of the day, his heart rate leveled off, his fever went away, and he started acting like himself again.
Then came Sunday (today). We weren't taking anything for granted, so early in the morning, we checked his vitals. Want to take a guess at what we found? His heart rate was up, he was running fever (climbing into the 101 range this time), and his oxygen sat levels were way down. We put him on oxygen and let him rest. Over the course of the day, his heart rate leveled off, his fever went away, and he started acting like himself again.
We don't know for sure what's going on with him. We aren't prepared to take him home if there's a chance these "mystery fevers" might get worse, and the pattern so far suggests that they could (since his temp has been higher each day, and he's had more trouble with his oxygen sats). It would make more sense if the fever and low sats were continuous, but the way he returns to normal throughout the day has left his status in question.
Interestingly enough, William has had similar episodes about once a week since last summer -- fever, increased heart rate, and low sats, all of which return to normal by late morning or early afternoon -- and although we haven't figured out what William's issue is, we've learned how to address it when it comes up. What's happening with John-Raven seems similar, with the difference being that it's happened three days in a row, and William's episodes have historically been confined to a single day.
So for now, we're here in the hospital, watching the boys closely and trying to help them get through these last stages of whatever so we can all get back home.
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