Day 13

Not much to report today. Sam is "stable," whatever the hell that means. Nearly all of the seemingly infinite number of vital signs, numbers, and levels that the hospital staff are tracking are in a good place or moving in a good direction. They've taken him off the blood pressure meds, they are starting to wean him from the ventilator, he's being given more breast milk (and he's crapping it out like a pro), and he gets pissed when they change his diaper. (Well, as pissed as he can be given that he's mostly sedated and woozy.)

So these are all good signs. And yet I can hardly bring myself to tell people that he's doing well. Because he's not. He still has HLH, and that will kill him if these treatments don't work, or if his body decides that the 6-8 weeks of pounding he's going to endure (plus the bone marrow transplant, should we get that far) is just too much to handle. It's been less two weeks since we admitted him, and already most of his major internal organs and bodily functions have come into play. Brain and nervous system. Heart and blood. Lungs. Liver. Spleen. Kidneys. Pancreas.

A week or so ago, they came to check his heart. My first thought--which I later recounted to friends--was: "Wait, that's at risk, too? How many mines are in this @#& field?"

One of said friends replied, "It doesn't matter how many mines are in the field. The only ones that count are the ones you step on."

He's right. But it's still a minefield.