April 3, 2024

Today was a nice stimulating day for David. He was apparently pretty grumpy overnight and not liking his SCUBA. However, his grumpiness remained after he got it off this morning. Once it was off though, he was able to fully participate in the wear pink day by sporting a pink hat and blanket. Due to his grumpiness though, the hat didn’t last for too long. He enjoyed seeing all the pink on everyone who visited him today. 

OT came by late morning and decided David is now in a good place to bring out a floor mat to play with toys and sing songs on the floor. After putting him in a cute gown, he sang Wheels on the Bus and Itsy Bitsy Spider before playing with a fun giraffe popper toy. He also worked on sitting and rolling a bit. He definitely had a poker face on through the entire session, but seemed to reach toward the toys as if he wanted to keep playing with them. They ordered a floor mat for his room for future activities. Hopefully we can get him up and keep him active more. 

After OT’s visit, David was zonked. We could tell he was going to take a good nap, so SCUBA was put back on for nap time. He awoke between 60-90 minutes later and was super upset because he cannot see through the mask. Once that was taken off, David got to come sit in my lap for a bit. We sang the songs from OT and added in Twinkle Little Star. We also tried to read some books, but mostly, David just relaxed against me and slept some more. I think he slept most of the day (probably because he was up all night). I guess we’ll see what kind of night he has tonight. Maybe he was just exhausted from all the extra stimulation today. 

This evening, after dinner, Eli and Anna came into David’s room (after being asked to wait in the hall). Well, they drew us a picture of our family (Eli’s in the red, Anna’s in the blue). Eli then drew David’s nurse and then he also drew David’s crib and put David in the crib. They also tried to give David all his toys before helping to give him some pats to calm him down and say goodnight. Anna was so good about sharing her pink blanket with David today too. 

Otherwise, David’s main goals are to work on weaning his ventilation support and increasing his feeds. We are still increasing by 1 ml every 12 hours, so sometime tonight, he’ll be up to 6 ml per hour. His vent support today was RAM all day with SCUBA for naps and then SCUBA overnight. He is no longer getting daily x-rays so we’re hoping his lung is improving. He did not seem to tire as quickly on the RAM today; but was starting to tire this evening. David also really hates having his blood pressure taken – and he needs it taken hourly since he no longer has his art line. This evening though, they got the approval for at least overnight to check it every 2 hours instead and allow him to rest. 

I also learned a bit more about his pulmonary vein stenosis (narrowing) as seen on his echo. Two weeks ago, the gradient across it was 3, last week it was 4, and this week it was 6. I inquired whether there was a threshold that we grew concern if it hits that, but apparently there is not. I was thinking back to his stents and if the pressure gradient was 10, that meant it was time for a cath procedure and ballooning those stents. Since no one wants to touch the pulmonary vein, it’s just a number that is monitored and paired with how he looks and acts clinically. Right now he’s not showing any signs of it being an issue, so we are not concerned about it at the moment.