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March 5, 2024
I don’t want to speak too soon, but it was a fairly uneventful day. Overnight, David missed his friends and invited everyone into his room to check out his arrhythmia. It turned out the solution was to just unplug him from the pacer. He was fairly calm today – definitely showing emotion when he does…
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March 4, 2024
I’m counting today as a success. They took David back to the operating room around 1 PM today, and by the time he returned around 3:30, his sternum had been reattached and most of his muscle and skin closed. This was more than his surgeon anticipated he would tolerate, which was wonderful news. There are…
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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. …
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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…
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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…
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February 29, 2024
How to describe the day? Neither great but not terrible either. There were several times throughout the day that David needed attention. I don’t know what it is about him, but he likes it when everyone comes into his room to watch his numbers and try to figure out how to improve them. This morning…
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February 28, 2024
David had another good day! Overnight he had some small swings in his blood pressure but overall he was happy. He wasn’t peeing as much as they would like overnight but after hearing that while the doctors and nurses did their rounds he started to pee more. However they would like to increase it a…
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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…
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February 27, 2024
Just a mini update. David is settled in and doing well as I get to sleep in his room. He is under lots of blankets keeping him warm. A byproduct of them cooling him down for his operation I believe.
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February 26, 2024 – Update 2
David went back to the OR at 3:30. His surgeon speculated that it could take an hour if David was able to come off of ECMO and needed nothing else, or else 3-4 hours if he needed the central shunt. I eventually left Adam at the hospital around 9:30 because I had a few things…