There's really not much to say about today. David slept in late this morning. Once he awoke, he got his respiratory treatments, and then he had OT. He tolerated tummy time a little better than he has in the past, which was excellent. After OT, he spent quite a bit of time in his tumbleform … Continue reading May 5, 2024
Category: David
May 4, 2024
David got moved to a new room this evening. Since February 14th, he has called 3122 home, but as of tonight, he gets to call 3124 home. When he was first born, 3124 was his room, and he was on the fast path out of there. Perhaps, this change of scenery is what he needs … Continue reading May 4, 2024
May 3, 2024
Let’s start with the highlights of the day. First, David had the best wagon ever! He did 4 laps around the unit, and as we were finishing the fourth lap, Fern came trotting up. A sheet was found, and then Fern joined David in the wagon and we did a 5th lap with both of … Continue reading May 3, 2024
May 2, 2024
Well here we are. Another day, same results. Before we get there though, let's talk about the highlights. David only had 1 change that came out of rounds this morning - reduce his milrinone again and see what he does. It has a long half-life, so effects won't be noticed right away - and with … Continue reading May 2, 2024
May 1, 2024
Happy half-birthday David! There's just so much I want to say and so much emotion bottled up into today, but it’s also getting late. One year ago, we were likely thinking today would be his first day eating some purees, which would probably be sweet potatoes like his siblings. Six months ago we did not … Continue reading May 1, 2024
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 … Continue reading April 30, 2024
April 29, 2024
David had a great day - probably his best day in a while. I've never seen him so smiley and happy before. He was cooing and there was a time I felt as if he was close to a giggle. He didn't have very many changes today. Overnight, his oxygen was weaned to 21% (room … Continue reading April 29, 2024
April 28, 2024
It was another day of a step back, in the hopes that the coming days are steps forward - but you never know with Mr. David. It's definitely not a linear progression, maybe a sinusoidal wave added to a linear equation would be a good way to model his trajectory. Anyway, when I arrived, David was … Continue reading April 28, 2024
April 27, 2024
Today went better than the last couple days. David still had moments of fussiness, but most of the time he was consolable, he had more smiles, and was able to take some naps as well. He's starting to feel better. In my non-expert opinion his discomfort is still related to something with his digestion and … Continue reading April 27, 2024
April 26, 2024
Today was very similar to yesterday in terms of David’s demeanor. Once again his fussiness ruled the day. He seemed very uncomfortable. No one is quite sure as to what is causing the discomfort - is it heart failure, is it digestive, does he have fractures? From what I and others think, it seems to … Continue reading April 26, 2024