May 6, 2024

David did not have many changes for today. Apparently his lipids were restarted last night since the order was never removed from his chart. So today, they were stopped once again, and David became free from all except his feeding pump again. David was also started back up on digoxin. He will need to be watched super closely, especially his potassium levels since he’s only receiving a daily dose of metolazone, which is the diuretic that he responds the best to. David also went up to 26 kcal on his feeds, and this is where they will stop for now. 

Tomorrow’s care conference has been postponed for one week. Since David will be discussed in depth at the cardiology conference on Friday, it didn’t make sense to meet this week before that. This will give them that much more time to try to figure out a plan for David. So far though, everyone is super encouraged that he is doing well off his milrinone since I don’t think anyone thought he would tolerate it. Once again David’s defying the odds. 

And now the biggest news – David will likely be going upstairs on Wednesday (pending space availability)! Just shy of 3 months in the CVICU, he’s ready to leave (for now, they could always send him back down). However, the doctors were discussing David and talking about him moving up in front of David today, so we’ll see if David allows it. They must have not received the memo that we never tell David our plans. There’s just something magical about David doing well in 3124. 

Otherwise, David had some up and down moments today. He still gets rather irritable and has trouble calming. No one quite knows what it is – it doesn’t seem to be pain as it doesn’t go away after receiving pain medications. Is it withdrawal? Is it neuro irritability? He’s been receiving more PRNs lately for it (he responds best to Ativan), and today we put in a consult to a new to us team called PACCT to see if they have any other ideas. We haven’t seen them yet, but in an effort to try to keep him more comfortable, one of his neurodrugs (gabapentin) was increased in dosage.  Otherwise, I think David might be getting rather smart and dictating what he wants or doesn’t want to do by changing his mood. He loves getting out of his room and exaggerated rocking movements being held in positions that require no work from him.

A child life specialist gave him some cuddles this morning. It took him a while to settle for her; however, I did notice he got quiet as she sang him Taylor Swift’s Daylight. Wheels on the Bus wasn’t otherwise cutting it (maybe he thought he was going to have to work). She finally got him asleep and then he took a little nap. When he woke up, the hospital volunteer stopped by to see if they could play with him. David once again refused to settle, and then OT stopped by. They thought they’d give him a fun day of cuddling to work on hand/arm skills, but David still say no, he didn’t want the cuddles. While he was unhappy with OT, respiratory came by and then he was upset with both RT and OT. He did do a few stretches for OT. Later speech came by, and his mood wasn’t much better. Finally, his nurse decided maybe he needed to have a dance party in his room and playing with his shakers, and all of a sudden, things were ok again. David seemed to enjoy his dance party.

Afterwards, she took David outside! We met up with Fern and Eli and Anna, and all of us headed out to the playground. David went down the slide by himself, and then with me. We saw Fern go down the slide with her mom. Eli and Anna blew some bubbles. For the most part though, David just enjoyed the breeze and sunshine and being outside. He didn’t even have respiratory support outside (well, it was available if he needed it), but he did so well. Not even a dirty diaper upset him out there. When we finally went back inside about an hour later, he slept so well. 

Finally, today kicks off nurse appreciation week. David’s journey has been impacted by countless nurses who have provided him exceptional care – some that we know, and likely several more that helped him behind the scenes. The following are the bedside nurses who have impacted his journey so far, in order of when I remember meeting them: Kyle, Sarah, Mo, Dani, Carissa, Cailin, Megan, Demi, Paris, Alejandra, and Madi. These (mostly unit 3) nurses have impacted David’s journey in different ways, but we wouldn’t be here without them. I don’t know if we’ll ever be able to fully express our gratitude for everything they have done for him and us, but we definitely will not forget them.