Day +14: We are home! We left the hospital around 3 pm through a row of doctors and nurses with silly glasses who sang us a goodbye song. I wish I had videoed it! We walked out with a cart full of stuff we accumulated, a bag full of medicines, and one sleepy girl who was overwhelmed with being home. Thankfully all of her meds are through the gtube so we don’t have to mess with the IV. A nurse came tonight to show us how to use a Joey pump, which will do Kiira’s continuous feeds. While we waited, I tried giving her a bottle, but it almost looked painful for her to swallow. I gave her a little food too, but we know this will all take time.
Kiira’s sisters were overjoyed to have us all back. They wanted to give Kiira a bunch of toys, sing and talk to her. Kiira was so happy!
For awhile we will be returning to the hospital daily for clinic. They’ll draw daily labs and examine her. They told us to expect to get re-admitted to the hospital at some point, since it’s bound to happen. For now, we’ll be adjusting to our new norm, administering about 10 meds 3x/day (which actually isn’t much compared to some post-transplant), waking up every hours to refill her good pump, and trying our best to keep her fever-free so we can stay home.
WBC: 2.5 (L)