Halfway Home (D+50)

"Believe you can and you're halfway there." - Theodore Roosevelt

I can't quite believe it, but Elise is halfway through the "100 day" transplant process. For almost all patients, the first 100 days after transplant is when all the most important stuff happens. It's also the length of time we are supposed to stay in the area of NIH.

Elise was formally discharged AGAIN from inpatient status just before midnight on Friday. She finished the 14 day course of IV antibiotics that were required when her central veinous catheter became infected. She's doing great now, plus she has no more IV lines hanging out of her arms or chest. She was able to take the first bath without having to worry about keeping some body area dry. A very big deal!

I was a little worried because she's had some growing sinus congestion and she had a little dry cough on Friday morning. I was concerned she might have picked up a virus since she doesn't wear her mask as diligently as she could. [The medical jury is out on how much and when its required - some are very conservative and others less. Elise chooses to listen to the less conservative voices and then improvise.] The sniffles are minor, but so were the symptoms that turned out to be the start of a blood infection 2 weeks ago - so better safe than sorry. But they ran a test Friday and she didn't turn up positive for any of the typical viruses, so it's probably just allergies or the constant in/out from humidity to air conditioning.

In any case, to celebrate her discharge and completion of the IV antibiotics, everyone slept in. Kinda anticlimactic but when you have to be at the hospital for treatment starting at 11pm and then again at 7am the next morning for 2 weeks straight, then sleeping in is a celebration. After that wild partying, we went to the "Chinatown" area of DC, visited the Smithsonian American Art Museum, and then walked down to the National Gallery of Art where they are having an Andrew Wyeth exhibition (which was really cool). It was a really great day.

Going forward Elise will be seen at the outpatient clinic twice a week. She'll continue to have blood tests to make sure things are going well and they be poking and prodding her for other stuff I'm sure. There are medications levels that need to be watched closely but mostly in the first 100 days they will continue to watch for the big 3: infections, GVHD, and VOD. 

Elise will also start "real" school this week. The school district in Ridgecrest starts this week and Elise needs to keep up. We have all her books for this year and NIH has a school room and 2 teachers to handle this sort of situation. So the tentative plan is that Elise will visit the teacher for lessons a couple hours a day. We'll see how this goes and adjust as necessary.

We're planning some sightseeing day trips, but our leash is pretty short due to school and appointments, but I'm sure there will be good opportunities. Elise is excited about going to the Montgomery County Agricultural Fair this weekend. I just hope they have deep fried butter and chocolate dipped bacon...