Hana had her best day yet today. We had a rough day with vomiting and a few rough nights where Hana was up for hours in the night acting like it was playtime. Last night she finally slept and today she seemed much like her usual self! She went to PT/OT and did great. Then she went to pre-school. Then she had a nice long nap and after that we went to see the trains again and then parked in an alcove where we brought out a bunch of her toys. They decided that she can not go to the Playroom in the afternoons during the respiratory season because there is too much risk of her getting sick. They are keeping her on continuous feeds of breast milk, no fortification with formula for a while to see if she stops vomiting so much. She did vomit once today after her particularly hard to handle medication – persantine (which prevents her from getting her omeprazole for her stomach, since it is contraindicated). She has been a busy girl and it is hard to keep her contained to her Berlin Heart tether. She is up and walking a bit, still a little unsteady on her feet but she is really starting to move!
Today Paul, my mom and I had the first part of our training on the Berlin Heart. This was mostly basic operation, our limits, procedures so that we can leave Hana’s room without a nurse! We are still confined to the unit, which isn’t big, but it does include the day room/kitchen which is where they hold preschool in the mornings. So, starting tomorrow afternoon we can take Hana to preschool by ourselves and hang out in Day Room all we want! We are very excited to have this freedom!
Day 49 in the hospital, Day 31 post-Berlin Heart, Day 22 on the transplant list.