February 27, 2024

David had a pretty good day. He really likes his new shunt and he’s become like a new person with it. One of the cardiothoracic surgeons who has been in the operating room for all of David’s surgeries was super excited when he stopped by. He could not believe the improvement since last night. There has been much rejoicing in David’s progress today. His ventilator is on room air and he’s still maintaining saturations! His surgeon is a little concerned that his lungs might start to be flooded with blood, but he can always adjust the band around the shunt if that happens – so we will see how it holds up over time. 

Today has been mostly a day of rest for David, and trying to get some fluid off of him. Tomorrow they will start to close his chest. It has been open for 2 weeks tomorrow and it is unlikely to close all at once at this point, so it will be a staged closure. They will start at the top and see how much David tolerates. The skin needs to be closed for infection purposes, even if the breastbone isn’t completely attached. 

Also, today our nurse reminded us that it is Trivia day. We have always forgotten about trivia, and the one time we tried we joined late and had no clue how to submit our answers. Well, we still joined late and missed the first two questions, and had a glitch later with another question when it didn’t load completely, but David remarkably finished 2nd! He did make his way up to first a couple times. It was intense and he lost his first place position on the final question. He needs to watch some more Frozen to know how many brothers Prince Hans has. So, he ended up 2nd place – not bad for a rookie! He won a little book for his efforts. 

David also got his EEG leads removed today. There is still no sign of seizure activity and his skin could use a break. His nurse then did a really good job of cleaning the glue out of his hair (it’s so soft again now), and cleaning him all up. He looks so good! 

David also seems to throw wrenches around dinner time when Adam, the older kids, and I want to spend a little time together. This time, David’s arrhythmia started acting up again. He was getting an ECG to record that rhythm when I left the room to meet everyone for dinner. They had just printed it out and were pulling the leads off, and his nurse thought it may have been caused by one of his medications. However, by the time I returned from dinner, his room was full of several others looking at the waves and discussing what his heart was doing. One cardiologist suggested pacing David. When most everyone left and his nurse plugged in the pacer, the technology seemed to throw a false reading because his heart output flatlined on the monitor, but with his open chest they observed it was actually still beating. They quickly disconnected the pacer and  called the others back into the room and of course that behavior was not observed again. So, David and his heart arrhythmia seemed to be the excitement for the day. David must have thought he needed more attention because for the most part he was left alone today. 

During this time, Adam was in the Endzone with Eli and Anna and they did some sand art, before playing some bubble hockey. It sounded like Eli is getting really good at bubble hockey. After David seemed in a good spot though, I took them home because I didn’t really want to drive in the snow that was falling. 

It sounds like we will still be in the CVICU for a while yet. The chest closure and getting settled with that could take another week or two. Once his chest is closed, then David can start working on weaning from the ventilator, so he still has a long journey ahead, but we feel we are finally on a path forward. David’s nurse who has been with him for the majority of the days since his Norwood enters her long stretch of time off now, so we’re hoping when she sees him next, he has made some good gains (unlike this past weekend when she was excited to return to see his chest closed and instead returned to see him back on ECMO).