Today was a relatively uneventful day for David. When I arrived, I found out that David and I had the same sense of fashion today as we were both wearing our Buffs gear. He was apparently happy early this morning, but by the time I arrived, had returned to his "normal" level of fussiness. We … Continue reading May 16, 2024
Tag: Rachel
May 15, 2024
Today was a day of learning. We met with the transplant team, and they explained the process and everything that goes into being listed, finding a match, and what life looks like after a transplant. There's a lot of information for us to process, and we'll figure it all out in time. We have a … Continue reading May 15, 2024
May 14, 2024
A busy, but less exciting day for David today (thank goodness)! It was actually a really good day for him. He had two field trips off the unit and when he was awake, he was happy and wiggly and just seemed like himself. David kept his nurse busy today, but it was a good busy. … Continue reading May 14, 2024
May 8, 2024
Another day of discomfort for David. At least the morning was. I was hoping that being NPO and then getting 2ml of straight milk with no fortification would help. However, this morning, he was just as uncomfortable as yesterday. I don't think even his ativan helped. However, I think it was because his potassium supplement … Continue reading May 8, 2024
May 7, 2024
Well, David overheard the plans yesterday, and like we thought, he has other plans. This afternoon while I was discussing with a provider and he was in his wagon, one of the nurses nearby said she saw him moving his head back and forth as we were talking, as if he was intently listening in. … Continue reading May 7, 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 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 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 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
April 25, 2024
Fussy, fussy, David. No one knows why he was so irritable today. He wasn't screaming upset, just fussy and didn't want to sleep. I think most of the day was spent trying to comfort him and figure out the reason behind the cries. There was no clear cut reason for the fussiness - no drugs … Continue reading April 25, 2024