Day +38: Why we're still here

We are halfway through our eighth week at Children's, and more than six weeks post-transplant. In many respects Sam is doing very well. All evidence so far points to a successful transplant (good engraftment), and the HLH bio-markers the docs watch in Sam's blood are in a good place; no worries there. Though it's still relatively early, there are no signs of graft-versus-host disease.

Sam is feeling really good, too. He's alert and happy a lot, he's had only a single (and very brief) low-grade fever in the last 10 days*, and he seems not to have any discomfort. His blood pressures have come down a lot, which means he needs fewer meds (always a good thing), and he's being weaned off of steroids--also good news.

Alyson's first full day with Sam since she started work again this week. Sam was in fine form.

So the big picture looks good.

And yet we are still here, and will be until they can figure out why Sam's breathing rate is sometimes high and a bit labored. He is on oxygen, as he has been for more than a month, and has for 10 days or so been getting treated with nebulized albuterol. The albuterol helps control the symptoms but doesn't address the not-yet-identified source of the problem.

The number in white is Sam's respiration rate, which should be in the 30s or 40s. All the other vitals (green = heart rate; blue = blood oxygenation; pink = blood pressure) are good or very good.

Sam sounds clear in the stethoscope--has for weeks--and none of the testing they've done (multiple x-rays, CT scan, echocardiogram) has provided any clues. But the symptoms persist. The conventional wisdom is that he's still too weak to fight off the rhinovirus (common cold) he tested positive for on Day +1. Another theory: Sam's lungs were damaged by HLH back in June, and he hasn't yet recovered.

Sam gets a breathing treatment (albuterol) 4x/day.

Neither theory is very testable, so until they decide that this is actually a problem (and resort to more extreme diagnostic measures, such as a bronchoscopy), there's not much to do but try to treat the symptoms and wait for Sam to get stronger.

And that means not getting to go home.

* For a while he was crossing the (admittedly low) fever threshold of 99.5 °F / 37.5 °C every 24-48 hrs. That he's so much less prone to having a fever says good things about his recovery and lack of infection. It also bodes well for our discharge, whenever that day comes: the fewer times Sam crosses that fever threshold, the fewer times we'll have to bring Sam to the ER.