One week. It's been one week since we said goodbye to David. I've wanted to post something for a while, but it is a struggle. If anyone is familiar with Randy Pausch's Last Lecture, at the end he said the whole lecture was a head fake. It was not a lecture for those in the … Continue reading June 27, 2024
Tag: Paris
June 17, 2024
So, I'm sitting here at home and don't know what to do with myself. There is plenty of stuff to do here that has been neglected the last few months since it didn't seem as important as being with David, but my mind is still with David tonight. I was able to spend last night … Continue reading June 17, 2024
March 31, 2024
Happy Easter! Here's a quick recap of the weekend: Yesterday, March 30th:Slight step back, which is not completely unexpected. Friday David was on RAM all day and SCUBA at night. They tried to do the same on Saturday, but David was a bit more agitated and had an increased work of breathing. He was eventually put … Continue reading March 31, 2024
March 12, 2024
Apparently David knows quite a bit about superheroes because he won trivia today. All while being transported to IR and having a PICC line placed! Good thing his mom accompanied him on this trip, because she knows hardly anything about superheroes. David was brought down by someone from respiratory, his nurse, his NP and his … Continue reading March 12, 2024
March 11, 2024
Well, David’s chest did not get closed up today. His surgeon did say it’s only open a tiny bit (1.5-2cm) and has a chance it could heal on its own. They will reassess it next Monday. In the meantime they replaced his wound vac, and removed his chest drains. Before the procedure, they were able … Continue reading March 11, 2024
March 7, 2024
Not much of note for today. They are still weaning his ventilation support and have been mostly happy with his progress. They have been giving him some non-IV medications to help him wean off some of the IV sedation. However, David continues to get very upset whenever he starts to wake up. He holds his … Continue reading March 7, 2024
March 6, 2024
We had another reality check today. David had a CT scan this morning, and we got the results. They were what we expected, but not what we wanted. He has new brain injuries that are consistent with what they would see with a stroke or strokes. He had a CT scan a couple days after … Continue reading March 6, 2024
March 3, 2024
David's big goal today was to get some fluid off in the hopes that his chest can be closed tomorrow. It has not been successful, so it seems very unlikely that his chest will be closed tomorrow. He still has overnight to make some progress, but probably not enough if he does make any headway. … Continue reading March 3, 2024
March 2, 2024
Constant tweaks and medication changes seem to be the theme of the day. David's arrhythmia returned overnight, so they tried the new medication (esmolol) and it seems to be working. However, it turns out that they no longer believe that the other arrhythmia medication (amio) caused his liver enzymes to skyrocket. The leading thought now … Continue reading March 2, 2024
March 1, 2024
David has hit a few “milestones” this week that I have forgotten to call out. Wednesday had been 2 weeks since his Norwood surgery. Yesterday has been 4 weeks since he was admitted, and today he is 4 months old! Of all his monthly milestones, 2 months is the only one he’s spent at home … Continue reading March 1, 2024