Today is going to be a big day, lots to do before we can get discharged tomorrow. You read that right, discharged! If everything goes well today we will be taking Miss Ryman with us to live with Julie and Corey! Sure hope they are as excited as we are :).
Today’s plan includes:
1) Getting 4 month immunizations (it is important to get these before transplant but we will have to keep an eye on her temperature over night).
2) Removing PICC line from her arm, we will be discharged with the one in her leg so we can do lab draws twice a week at clinic. It is also easy access if her ammonia goes up and she needs Ammonul again. The transplant team isn’t a fan of any line since it is a risk for infection.
3) Getting home nurse visits set up to do a dressing change once a week.
4) Getting clinic schedule set up.
5) Make sure meds and formula are on their way to Julie and Corey’s.
6) Doing a screening for Cystic Fibrosis, we haven’t mentioned this yet but Ryman got flagged on her newborn screening test that she could possibly have CF. We decided not to worry about that for the time being because CPS-1 was a much bigger issue. However, we need to know for sure before the transplant. Prayers that Ryman has only one genetic disorder!!!
I guess I could go on for a while but you get the point, today is a big day!
We will update you all with how the day goes… Hopefully tomorrow morning with a pic of Ryman in her second leaving the hospital outfit!
Much love, B
Corey came to hang with Ry one night while Jeremy was gone so I could grab some dinner. He and Ry watched the game, so cute.