Today was kind of an up and down day for David. They were able to wean his oxygen support fairly quickly overnight from 12 liters at 40% oxygen to 3 liters on room air. The nurse overnight thought he may not have needed the high flow, but was afraid to take it off in case he needed it when he awoke. Overnight, David was also having low blood pressures, so they held one medication (propranolol) and then he got a bolus of fluid to try to bring that up.
Due to his increased oxygen support and low blood pressures, David essentially had no changes today. It was a little bit of a delicate balance seeing as though his lungs do not want fluid, but his blood pressure was saying it needed more fluid. It also doesn’t help that David has had 8 different nurses caring for him over the last 48 hours. Usually, we have at the most 4, and if we’re lucky the day and night will repeat the next day so we’ll have some consistency. Having 8 has been a little crazy, but since David is the most “stable” on the unit, he gets whoever is available. Although, when David heard most stable, he decided today would be a good day to start vageling and showing his chameleon colors again. It’s also hard with the constant change that no one knows his baseline, so they wouldn’t necessarily know when something is a little off. I think due to this, David was unable to wean off his high flow today since he has certain parameters he should be in, but then there are other parameters that the team has deemed ok for him since he’s not always in his goal range.
Otherwise, David’s day was fairly uneventful. This morning David got some time in his high chair – just playing with various toys and he had Mickey Mouse on tv. He sat in the high chair for probably two hours playing, and eventually one of the hospital volunteers came to visit and play with him until David started to fall asleep. We opted not to do messy play since I don’t know the rules of that while on high flow.
After nap, David and I read some stories. I wanted to take him out of bed, but based on the time, I knew he was due for one of his respiratory treatments. While we waited, a child family life specialist came in to visit and play with David. She brought him a couple more books to read. Finally, this evening, David got down to the mat where he had some play time. Really, I wanted to get him to do some tummy time, and he continues to get stronger every day. He was pushing up with his arms and moving his head in both directions. Eli and Anna both wanted to show him toys and interact with him, which is great, but it is very cramped quarters for both of them and David’s toys.
Tomorrow I think our goals should be to wean off that high flow so we can resume wagon rides again. I think David missed the nightly novel, so I’ll have to read him the next chapter so he’s caught up and ready for it again tomorrow night.
He is a very busy boy, lots of activities and interests. Yes, you had best read that chapter to him, as a reader I know how important it is to keep up with the story 😊. Praying that the oxygen/blood pressure issues are able to be sorted out today with the result being a more comfortable Mr. David.
I had to turn around and go and grab the book – I almost forgot. And then he was fast asleep within two pages 😂
He is getting so much hair! So cute.