April 24, 2024

Today was a day of fun visitors and new adventures. When I arrived, the room was still dark since David was snoozing. I spoke to his nurse who was sitting right outside his room where he could watch both of his patients. He said David slept well through the night, which was excellent. Then I entered the room, and had a startled jump once I saw someone lurking in the curtains. It turned out to be Taylor Swift! What a surprise! 

David started off his day bright and early with OT. He played with some toys and worked on his rolling. When he was done doing his exercises, he spent the rest of the morning mostly napping on the mat on the floor. We had decided that when he woke up, we could take the nasal cannula off since it wasn’t being used, and go for our wagon ride. Were we ever surprised when some special guests from the Broadway Lion King show that’s showing at the Orpheum showed up. David got to meet Simba and Bonsai. He was a well-behaved young man and seemed happy to have a whole group of people in his room with him. I think there may have been other cast members in the hall, but we were ecstatic to meet whoever came into the room. They left David with some autographs and a gift bag. 

After the Lion King excitement, David got to go for his wagon ride. Fern just so happened to see David getting ready to go, and came in the room to help him. In fact, David got to hold Fern’s leash and take her for a walk. He held her leash for the whole walk around the unit – maybe dropped it twice. This was incredible since he did it with his weaker left hand. We were so happy David got to go on his first wagon ride, and got to walk Fern in the process. The day couldn’t get much better. 

Later, we finally brought Taylor over to see David. He loved staring at her, and gave her so many big smiles. We posed her in different spots around his bed. Later when Eli and Anna arrived, they didn’t notice Taylor at first because she was hiding in the curtains again (I bumped into her doing something else, so she got tucked away). They were so excited – Eli even posed nicely with her and actually smiled nicely and looked at the camera. 

As for David’s health, it’s a lot of the same. This afternoon, David got pretty worked up during respiratory treatments and was working a little harder to breathe, so they put him back on his high flow. Hopefully he settles out with that little bit of extra support. His echo did not show any new signs of concern, and his feeds are still advancing. I think they did not wean any withdrawal meds today since David was a bit fussy this morning. His keppra should have been completely stopped today, so now David will be down to one seizure med now. If I recall correctly, the neurologist would like him to be without this med now for 2 weeks before she comes back and then we can discuss weaning the other seizure med. Overall, Taylor gave some good comic relief today (and a few frights), but we had a good day.