Well at least back in out temporary Philadelphia home 😄 The minute we walked in the door, Stephen was a totally different child. It was insane! He walked right over to his toys and started playing. He could badly get him on his feet in the hospital, but once we were out of "that scary place" he was feeling much much better. Now that's not to say we haven't had a few tantrums, but they've been typical 2-year old tantrums and not the scary crazed tantrums. He's been playing, talking more, walking more, and overall just feeling much better. And he's been peeing like crazy!
Tomorrow morning we had back to CHOP for our first transplant clinic appointment which includes lab work to check his Prograf level (Prograf is one of the three anti rejection drugs he'll take for life), a blood pressure check and a check up to make sure everything is good. We also got a call this afternoon that his nephrologists and urologist have decided that they want to take the Foley catheter out, which was a huge surprise. They originally said he'd have it for at least three-four weeks. So that means no more restriction for bath time (you can't submerge it in water) and no more having to double diaper. I've been cutting a hole on the inside diaper to put the catheter through so that it stays cleaner. The outer diaper catches all of the pee, while the inner diaper catches all of the other stuff. It's worked out really well, but it sure is a pain in the butt when you're changing a diaper at 3 am! Plus, then it's one less moving part hanging off of Stephen's body.
Being home has also been good for learning all of Stephen's new medications and his new feeding schedule. The medications have been pretty easy with the help of a program called MyMedSchedule.com. It keeps track of all of Stephen's medications, all 12 of them, and lets you print out a sheet that sorts them in all kinds of ways including by time. It's been really helpful. Although, nothing will help you if you oversleep and miss your meds which almost happened this morning! We were up with Stephen a few times in the middle of the night and ended up sleeping in until almost 9 am when he is supposed to get his anti rejection meds. So now I've got an alarm set on my phone for each morning; just in case! I don't have his feeding schedule down as good as the meds (they increased the volume compared to what it was pre-transplant and there's been a lot of trial and error trying to get it all in without making Stephen puke), but we'll get there eventually.
Other than that, Bill has been catching up on a lot of work stuff, I've been doing lots of laundry, and unpacking and organizing the apartment, and we spent a few hours this afternoon walking around the city and enjoying the summer weather. It was really great to get out in the fresh air, stretch our legs and explore some of the parks near us.
I also just wanted to put this out there; if anyone has any questions what-so-ever about Stephen's transplant, recovery, or anything else, please feel free to leave it in a comment and I'll answer them all in blog post. I feel like I might have skipped over a lot of stuff and wanted to make sure that if anyone was curious about anything, that you should please ask. Im happy to answer any questions!!
Below are a few pictures from yesterday and today. The first is a picture of just part of what we had accumulated during our 13 day stay at CHOP and then a picture of Stephen as we were leaving the hospital. Then there's a picture of his nightly medications all lined up. It's a lot, I know! And the last two are him using a new "cup" that came today. The speech therapist we saw in the hospital suggested it as a way for Stephen to learn how drink from a straw. Is basically one if those squeeze bear that come with honey and a piece of soft rubber tubing for a straw. As soon as I took it out of the package he loved it! Hopefully this won't become one of those once and done deals! Oh and I added a really cute video of Stephen popping bubbles this morning to our YouTube channel. You can find it by searching for "lschwartz531" on YouTube. Enjoy!