April 30, 2024

Today had a lot of happy moments, some sleepy moments, and a few grumpy moments for Mr. David. Somehow, he completely slept through his echo and later his EKG. I don’t know how that happened. The last time he was calm for echo was when he screamed for the prior hour and a half getting an ultrasound. Hopefully, they got good images and measurements on his echo today. Things look stable from last week. Unfortunately, his tricuspid valve still doesn’t look any better – it’s still a moderate to severe leak emanating from 3 jets. I had a long talk with one of the providers this afternoon about his valve, and what it means. It really seems like so far, David’s body is able to tolerate the leak and handling it well, which is not the case for all kids with a similar valve issue. The big question remains though, for how long? We have a care conference set up for next Tuesday to talk about David and possible next steps. Apparently, they usually do these care conferences monthly, and she apologized that we had not done one yet since both Adam and I are usually well-informed of things that are happening. However, the next steps are not clearly defined, so it’s hopeful that all the teams can come together and have some deep discussions to present to us by next week. 

David remained on high flow today. He’s still on room air, and it was dropped to 2 liters, which means it’s essentially off. He was able to take it off to go on a wagon ride around the unit (otherwise, it becomes a much bigger ordeal as respiratory would also need to accompany him). Today he did two laps! He was just a rock star – basked in the sun at sunshine alley, and said hello to all his friends along the route. I think he really likes it when everyone comes out to wave to him and tell him how good he looks. Once the ride is over, David is not happy – he cries when he has to get out of the wagon and back into bed. 

While David was doing his wagon ride, Adam was doing Star Wars trivia for David, seeing as he’s the only one who has seen the films. Turns out, he didn’t know Star Wars as well as other kids, I think he ended up in 4th place. That was ok, David still won a Star Wars book. We started to read it and are learning the story together, until David got fussy. He then got some cuddle time with his nurse. He really enjoyed that and calmed down very quickly. He would have cuddled her the rest of the day, but she has to take care of his friend next door too. So, then David got some more cuddles with a volunteer when his friend needed some attention. 

Eli and Anna had swimming today, so I had a nice quiet evening at the hospital with David. He mostly slept (due to some medication to help him settle when he wouldn’t calm earlier).

Also, last night I moved Taylor into the bathroom so she wouldn’t be lying on the cold hard ground where she kept ending up (and thinking she’d be out of the way). I don’t know how many people got startled when they either saw her or her reflection in the mirror. However, I think she startled me the most. I kept forgetting she was there and jumped every time I saw her. 

I forgot to mention yesterday, while Eli and Anna were in the Endzone, they got to hang out with some special volunteers. They are members of the Gopher Women’s hockey team (I think they are sisters). Eli told one of them all about Paw Patrol and the kids got to play bubble hockey with them. Adam said one of them said she was entering the draft this year, had received her masters degree and is now applying to medical school. Talk about a high achiever! Maybe we should have asked them to visit David to give him something to aspire to.