I feel as if David had a good day today. It was his first day on full feeds and he seems to be handling it well. Tomorrow they will start fortifying his feeds. With eating his food though, comes blow outs, and he had a massive one for his nurse last night. Also, he no … Continue reading March 9, 2024
Author: Jess
March 8, 2024
David had mostly good day. The nurse who has had the most time with him was back from her week off, and we were excited to see her again. There have been lots of changes since she last saw him, but it's nice having some consistency and she seems to understand him really well too. … Continue reading March 8, 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 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 not … Continue reading March 5, 2024
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 … Continue reading March 4, 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
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 … Continue reading February 29, 2024