Day +29: A corner turned?

Lots of good things happening with Sam these days. First and foremost, they did a second, different test of the spinal fluid the took from Sam 10 days ago and found absolutely no evidence of inflammation. This, in addition to other factors, means that the docs are no longer worried that HLH is on the rebound--a huge relief for us. (One immediate implication: they've started to wean him from the steroids.)

I don't think Sam has had a fever in three or four days--that's the longest he's gone in weeks. His fevers have nearly always been brief and low-grade, but every time he goes above 99.5, they draw blood (to test for infection) and put him on a course of antibiotics. Fewer fevers means fewer meds and fewer reasons for nurses to take Sam's blood (which eventually forces him to get transfused).

Sam's oxygen saturation is better, his respiration isn't as elevated as it had been, and the congestion he's been fighting for weeks seems to have lifted. Maybe he's over the cold? He's also not holding on to fluids so much, perhaps in part because he's not getting so much fluid intravenously anymore (several of his meds are now administered orally). And he's not as hypertensive, which means he needs fewer BP-related meds.

Best of all, Sam is simply feeling better. A week ago, when we were still wondering if the HLH was back, one of our doctors told us that Sam's demeanor would be as important to their diagnosis as any lab result. In that respect, Sam has been killing it lately--he's been alert, social, and happy. The last five days have been his best in at least three weeks.

The docs will likely want another spinal tap in a week or two--unlike the body, whose state can be readily monitored through blood testing and other procedures, there are many fewer techniques for assessing the health of the central nervous system; extracting spinal fluid is one of them--but this was always part of the post-transplant protocol, not evidence of anything amiss with Sam.

More evidence that things are looking good: we are being trained on how to change Sam's dressing so that we can do it at home. Nothing's in ink yet, but if Sam continues on the current trajectory, I'll be surprised if we're not discharged before Halloween.