March 9, 2024

I feel as if David had a good day today. It was his first day on full feeds and he seems to be handling it well. Tomorrow they will start fortifying his feeds. With eating his food though, comes blow outs, and he had a massive one for his nurse last night. Also, he no longer needs his TPN nutrition and they also stopped his lipids. He shouldn’t need either of them anymore, and they also would like to not pump him up with so many fluids. 

That’s the big goal for today and likely tomorrow – get fluids off of him. His diuretic is pretty much maxed out, so how can they get fluid off of him? By hopefully putting less into him. It was discussed, they will remove one of his IV lines tomorrow morning, and then it won’t need the 24 ml per day carrier fluid that runs just to keep it open. They will also try to switch some of his medications from IV to oral since IV meds also come with a flush of saline solution. Lots of small little things to try to put less fluids into his body. Some meds have been adjusted too to administer a smaller dose. 

David had 3 pressure support trials today. He absolutely rocked his first one. It was supposed to be an hour, but then rounds were happening at the end of the hour, and he wasn’t taken off until he had been doing the trial for 1 hour, 25 minutes. His next one he was doing pretty well, but came off it about 10 minutes early. His nurse repositioned him and suctioned him, which he hated and let us know. By the time respiratory came in to take it off, David was looking well again, but with other things that were happening, took him off anyway, and still counted it as a success. His third trial did not go as well, but overall everyone was happy with the progress he made.

Now, during each of the first two pressure support trials, OT came by to work on David. His nurse didn’t want him to be doing OT during the trial, so she asked them to come back. The third time they came back, his nurse was taking her lunch. The nurse who was filling in for her didn’t feel comfortable letting them proceed because his nurse knows him the best. Finally, the fourth time was the charm. They came back a little while later, and David was doing awesome, but then I had to leave. 

So, I got to spend the day with David while Adam spent the day with the other kids.  This evening Adam’s brother got married and since David had his nurses who know him best, we felt very comfortable leaving him to attend as a family. It was a beautiful wedding and we are so excited to welcome Dani and Jaxon into our family – our kids finally have a cousin! It was so nice to see other family that we hadn’t seen since before David was born too. After he has been born, we’ve either been at the hospital or at home sheltering him from germs trying to prevent another hospital stay. We are so thankful to have such wonderful nurses who care for David making it possible – his nurse even promised him to stay right next to his bed while we were at the wedding since David will act up if he thinks he’s alone (which he never is). 

A few other things we learned in rounds to day. David’s surgeon was in the next room doing a bedside procedure but he had finished and stepped out to join us in the middle of David’s round. He made it known that David will be extubated before he has an MRI. They are hoping to extubated him sometime this next week. However, David has quite drastic episodes where he drops his heart rate and turns a rainbow of colors (as his nurse phrases it). Due to this and that his natural heart rate is a little lower than they’d like, David is going to need his pacer wires in place for quite some time still, and David can not go to MRI with those. There is some concern with how well his pacer is working, and I’m not sure if David can leave the ICU if he still has those as well. They are also trying to transition off of one of his IV drips since that med can cause lower heart rates. Slow, steady progress though is always a step in the right direction.