28 Jul Wednesday update
I think (knock on wood) that Keegan’s fever has finally broken through this cycle. He had a fairly low-grade temp (100.9) overnight, but the last spike this morning was just shy of 104. That brought the vaso-constricting, retching, and vomiting back. Luckily, the IV Tylenol helped bring it down. When he is in one of these fever cycles, his heart rate stays elevated the entire time, spiking quite high (up to 180s this morning) at the peaks. It never comes down to his normal resting numbers in the 110s/100s even when the fever comes down though. Around 8pm, he finally came down to his normal for the first time since Monday, so I’m hopeful he is done for a few days and can get some rest tonight.
Infectious Disease came by one more time today. There are a few “unicorns” (we’re way past zebras at this point) they can test for, but they are almost 100% confident the fevers are not being caused by anything infectious. That means we are pretty much out of ideas as far as the fevers go. We will repeat his colonoscopy and endoscopy on Friday. If that doesn’t reveal anything shocking, our last straw here is immunology, which of course we won’t see until at least the week of the 8th. I guess the goal will be stabilizing him during the fever cycles until that point.
From a GI standpoint, he is not in a “good” spot, but we consider him rather stable. His nutritional needs are being met via TPN without any major complications. So, we can nurse him along for awhile longer on that front. His heart function appears to be stable also for the time being. As the steroids continue to come down, we anticipate his labwork will get more and more unstable, but we can’t do much about that at this point. For the record, I was mistaken about his maintenance level of steroids – he won’t hit that for 3 more weeks. That may give us a little more pad before the fevers hit full throttle, but if this last one is any indication, the amount of steroids from here on out will likely be a moot point. The fevers were already stronger than his highest dose. At the coming levels, it won’t make much of a difference.
Keegan finally walked around a little outside just before bedtime. It was good to see him out of bed finally, even if it was only for 5 minutes. We had some visits from friends and family today, which helped lift all of our spirits. This little ladybug always makes us smile.
