March 18, 2024

Busy day for David. He started off with an ultrasound to check on veins and arteries in his legs to determine which are open and which are occluded. Afterwards, he had his wound vac change. It sounds like it looks good, but he’ll continue to have that changed for the next couple weeks as his skin slowly heals up. I don’t think they are going to close the last little bit, but rather let it heal on its own.

I saw his surgeon briefly before heading out of the room. He said something about the trial run off the ventilator this weekend showed that the pressures that existed in his lungs are not there anymore. (well, this is what I think he said – it was a very brief conversation). He then said that the next step for David is likely a cardiac cath to check on his shunt, but we are taking David nice and slowly – one step at a time so I don’t have a timeframe on this. There is a possibility that his shunt is now too large and needs to be banded down some more to not flood his lungs. After the wound vac change, David had an echo, which was stable from last week. There is still some narrowing of his pulmonary vein that they have been monitoring. I thought it was resolved with his Norwood when the stent was removed, but it’s been on the echo for the last couple weeks, so I guess I was mistaken. He also has some tricuspid valve regurgitation – which last week the cardiologist told me might have something to do with the fluid on him since it’s leaking from the middle rather than where it was leaking and repaired before. 

IR also fixed his PICC line – it was starting to veer into a vein that headed for his liver, which is not where they wanted it. David has been diuresing well, so they will keep him on his current diuretic regiment, as he may actually end up with a negative fluid balance for 2 days in a row! He also had some blood in a stool today, so they had to stop his feeds again and will be getting an x-ray every 6 hours to monitor for changes. This evening, he had another bloody stool, but so far x-rays have been looking good and stable. 

Otherwise, I finally got a chance to turn on The Eras Tour for David today, and he started moving and grooving – lots of dancing from the little guy. I was surprised how much energy he seemed to have. His nurse practitioner was questioning why his sedation meds and other drips were at such high doses from changes over the weekend. The goal is now to get those back weaned down and get him to a place where he can start pressure support trials again and tolerate being awake.