Escape from NIH (D+26)

"There is nothing like staying at home for real comfort." - Jane Austen

Elise continues to do well and they have let her leave the hospital and start spending the nights at our apartment in Rockville. Yeah! This is a little earlier than we'd anticipated - they'd told us it would be 30-45 days after the transplant and this is 26. So I take that as a good sign. We're all very happy about being back together as a family unit.

She's not officially discharged yet, rather she's on a pass. The lead Dr was out today so the team didn't want to make the discharge call, but they also didn't want to keep her in. So the compromise was to let her out for the weekend on pass and then if things go well she'll be discharged to outpatient status on Monday.

But we brought some lovely parting gifts back to the apartment with us: lots of medicines. You don't really notice when the nurse brings them in but when you've got to dole them out and keep track of them it sure seems like a lot. The first thing in the morning is the worst, she gets 7 different meds, a total of 10 tablets/capsules. This should taper off a bit in the next few weeks.

We'll be making daily trips back to NIH. They still need to get some of the medication levels stabilized and they are watching a few other things as well. Her liver function tests are elevated which is likely from the IV nutrition that they just discontinued yesterday, but its something that needs to be watched closely. And her ANC dropped today which could be a normal variation (it's still above the desired threshold for this point in time).  Finally, she needs to visit the tutor. This will be particularly important when the school year starts again in August. Right now she's doing math review to stay up to snuff.

Elise is going to see the ophthalmologist tomorrow because she's complained about "blurry" vision. She says she can't read because of it. It may be a side effect of the conditioning process. They did a good baseline on her before they started the process so they'll be better able to tell what's going on.

Despite these things, we're all very happy to be together in our home, even if it is temporary.