The hospital: it's easier this time*

So far, this admission seems to be a lot less difficult than the first one. I think there are several reasons.

First, we are no longer in shock, and no longer worried that we might lose our newborn son in a matter of days. Back in June, Sam's fate felt, and I think was, very uncertain. (In the days after his diagnosis, I told my dad and brother, without any melodrama, that they if they wanted to meet Sam--ever--they shouldn't wait to plan a visit.) We still have a long way to go, but I certainly don't feel that Sam's situation is as tenuous as it was then.

It's true that we are months from being out of the woods, and that we still have to make it through a dangerous procedure that not all patients survive. It's also true that if the donor cells don't engraft properly, the HLH could return and cause a lot more damage to Sam than it did the first time.

Sam and Alyson, not long before the former shat on the latter.

But we're no longer reeling. We can see light at the end of the tunnel. (It's a long tunnel, but there's still light down there.) Moreover, Sam is in very good shape going into transplant. The HLH appears to be effectively dormant, and Sam has a perfectly matched donor. Whereas the doctors used to be very cautious about his prognosis (HLH is a humbling disease, they said), they are now upbeat and confident about his recovery. The future simply looks a whole light brighter than it did in early June, when we had no idea how this would really play out, but plenty of dark thoughts about how it might.

We're also more comfortable. The hospital is a dismal place to spend hours upon hours, but we've adapted a bit. We bring more food from home instead of scavenging through the hospital cafeteria's frequently dismal offerings. The big chair--the one we use to hold and feed Sam in--is better, more comfortable, than the last one. It rocks, and when it's in the reclining position it doesn't try to close up like a clam shell. Maybe best of all: since Sam has not needed to have his respiration, heart rate, and oxygen saturation monitored 24/7, we are not tortured by loud and seemingly relentless monitor alarms. None of these things is debilitating on its own, but in concert they were exhausting to cope with precisely when our coping skills were under severe duress.

Finally, Sam. When he was first admitted in June, he was still more or less a blank slate. He had just started to smile and make eye contact, but did neither very reliably. We were still sleep-deprived and felt very much lost at sea vis-a-vis our parenting skills. Sam consumed more of our energy than he gave back. Now, 12 weeks later, he's all smiles, and that makes us smile and laugh--a lot. We now feel a lot of joy being with Sam, and that makes spending hours and hours trapped with him in a hospital room a bit less dismal. (I'd give anything to be able to take him outside for a walk, but that's never going to happen.)

The next two or three weeks are likely to be pretty difficult, but I'm hopeful that we'll be in better shape to handle it all than we were earlier this summer.

P.S. Fun bone marrow transplant fact: Sam's original blood type (O-pos) will change to the donor's type, A-pos.

* But it still sucks.