May 11, 2024

There are not many changes for David – the goal of the weekend is to minimize changes and just get him to Monday. David did end up back on high flow a couple of different times today. He was having a little work of breathing and dropping his oxygen saturations. He overcame that and was able to come off that for a bit, but he got himself so worked up, that he ended up back on it again. 

He had some periods of wakefulness without being fussy; however, as the day went on, he seemed to get more fussy. However, with needing the extra oxygen support I wasn’t sure if he was in a good position for a wagon ride. Also, the other kid he was paired with also liked doing silly things that needed their nurse’s attention. When I left with Eli and Anna this evening (they were only at the hospital for about 90 minutes), I told Adam that I think David would only settle if he had his wagon ride, so he pushed for that once we left. It’s kind of funny – his nurses always seem apprehensive to do his wagon ride when he’s been so grumpy and agitated and kind of unstable. I don’t think they believe us when we say he absolutely loves them (even though his face doesn’t show it). However, once he’s in and going, his fussing completely stops and his oxygen saturations always go up into the 80s on room air and no other support. Tonight, he did 5 laps before it was shift change time, so his nurse needed to stop to give report to the night nurse. David fell asleep soon after that. 

Otherwise, David got to read some books today. I also made him sit up and work on raising his arms to push some toys. We tried cuddling for a bit, but he didn’t really want that either, so he got some reprieve when respiratory therapy arrived, and had to go back into his bed.

His PICC line has been having troubles with blood draws lately, so for the third day in a row, he needed the clot buster to try to open that line back up. He even had an x-ray to check PICC line placement, but it still looked good. I’m not sure why they are not running a continuous carrier through that line to keep it open at this point. His other line has continuous TPN and lipids, so it’s not like he’s not already hooked up all the time. I’m guessing it’s because we are trying to limit any more fluids into him so they don’t have to touch his diuretics before Monday. 

David’s blood pressures were also on the low end today. His heart rate has started to come up, but his blood pressures remain low. It’s something that will continue to be monitored. Tomorrow should be more of the same, but hopefully we can get in more wagon rides and get down to the floor mat where he can play with his siblings.