June 2, 2024

Yesterday they made mention a couple of times how David will likely go upstairs this week. Today, David responded with “will I?” Once again David is throwing some curve balls, and no one is quite certain what to make of it. 

After all of those gaggy episodes yesterday, they opted to stop his protein today. When I arrived, he still was gaggy (at least at that moment, Adam says he hadn’t seen it until I got there), and they were hanging a new feed bag without protein in it. I don’t know if stuff was stuck in the back of his throat or not, but he seemed to be struggling and he sounded very congested. Adam took the older kids to Riverside “sand” park while I cuddled David and hoped he would settle. He didn’t really settle until after receiving some Tylenol and even then, his heart rate was higher than his baseline, and he was requiring quite a bit of oxygen. 

I think the biggest fear at this moment is that David has come down with some sort of infection. That would explain his higher heart rates and increased need for oxygen and his congestion. However, as the day went on, his heart rate had returned more to baseline again and some of that congestion disappeared. The need for oxygen though remained. In fact, as the day went on, his work of breathing increased, so David went back to high flow. Last I saw he was on 50% oxygen at 4 liters, but Adam says he’s currently down to 25% oxygen. David also has not had a fever which is reassuring.

After cuddling for a while, I put David back into bed around lunch time (and took his clothes off him to keep him cool), and he hung out happily in bed for a while. Eventually, we turned on music and the 3 kids had a dance party. After a few songs, OT and PT came in to work with David. He clearly didn’t want to work today, because he fell asleep in the middle of his session. At first he woke back up, but a short time after that, he fell asleep for good. He slept the rest of the afternoon, while Eli and Anna did some art with their water mat, scratch paper, read some books, and then the End Zone. After the End Zone closed, I took them home for dinner (since we remembered the dogs needed to get outside this week). 

After I left, David woke up, and was able to go for a short wagon ride around the unit. He did 2.5 laps today due to some busyness in the halls. He was a bit upset about his shorter ride; however, Adam explained to him that he needs to wean his oxygen more if he’s to be trusted for longer or off the unit rides. They got some cuddles in after that, and David slept through the nightly novel. I’ll have to find some time tomorrow to get him caught up again. 

This afternoon, they increased his diuretics slightly hoping that might help with his respiratory issues. We’ll see how he does tomorrow. They may end up having to swab him for cultures to check for infection. We hope he doesn’t have an infection; however, he’s in the right place to deal with it if he does.