April 13, 2024

David had a really good day today. It started off a little rocky – he had trouble settling down for his nurse overnight. I forgot to mention they stopped his delirium med that he would get at bedtime last night since he had been on it for a month. His nurse ended up giving it to him as a one time dose but it didn’t seem to help. Really nothing seemed to help him calm down. Not even all the cuddles she gave him. Once they gave him a break from his SCUBA though, he apparently calmed quickly. He was just not feeling his SCUBA last night – I’m not sure if he’s over it or if there was just too much humidity in it. He doesn’t seem to like it when it’s like a rainforest and rains down on him and he can’t see, but when it’s drier and he retains visibility, he doesn’t seem to mind as much. 

After his rough night, it was a little unsure how today was going to go. Would he sleep through the day and get his day/night cycles mixed up and need the delirium medication again? Due to the night time agitation, and that we don’t want to push David too hard and end up going backwards, the team decided not to do anything today and just let his body adjust to the changes made yesterday. This was a great decision, because David was very much a normal baby today. He awoke, smiled, and played throughout the day, and then took naps. He was not cranky or irritable and was just taking it all in. In fact, he has even tolerated his blood pressures very nicely – just hold his hand and distract him with a light up / noisy toy and he doesn’t seem to notice it. 

David sat up in his chair for a while, and also got a bath. At the end of January, right before he was admitted, I pulled out and washed a bunch of clothes the next size he was growing into. Well, David only wore a couple of those outfits (maybe 2-3) before being admitted. At this point, I wasn’t sure if those sizes would even fit him, but I brought in a couple shirts for hims to try anyway. They are snug, but work. We tried his Harry Potter one after he got a bath. I can’t tell if he likes wearing clothes or not, but he’s pretty cute in them. David’s nurse mentioned a new goal for David is to work on weaning his respiratory support, because once he needs less support, he can go for a wagon ride outside! On a day like today, I’m sure he would like that fresh air and warm sunshine. 

David had OT this morning, but both Adam and I were not there. I was told they came and played with David for quite a while until he got tired and just fell asleep. He was napping when I arrived. This afternoon, Adam arrived with Eli and Anna (they had skating lessons and gymnastics in the morning). Anna went to play outside, while Eli stayed in the room and worked on doing some math with some math cubes before making them into crops for David’s combine harvester. When Anna returned, she found some books she wanted to read to David, and he gave her some really big smiles. Eli had also gotten some smiles earlier – David probably can’t wait to spend more time with them and learn so many things. We all played peekaboo with David later before it was time to go and then Adam got David cuddles. 

After having such a good day, I am hopeful David sleeps well and has a better night. So far, it sounds like he’s agitated on SCUBA again. Adam has tried giving him snuggles, but David is not seeming to care.  If he doesn’t settle down in the next hour or so, they will let him try RAM for the rest of the night.