Happy Superhero Day (FKA Pi Day)! We would like to introduce you to Captain Chameleon! His super power is hearing thoughts. We used to think he was just listening to the plans of the day and then telling everyone that was not actually the plan and reminding us that he's in charge. However, we have … Continue reading March 14, 2024
Tag: Cailin
March 13, 2024
Well, I should probably recap last night before covering today, as the events of last night drove everything today. Adam was sending me updates as I was finishing up last night's post, but there were too many unknowns at that time and things seemed to be changing by the minute. Anyway, David had a party … Continue reading March 13, 2024
March 10, 2024
Slow and steady progress was the name of the game today. David had his eyes open a lot more than he has since the surgery. Not only were they open, but he was tolerating being awake. He seemed to be taking in his surroundings and putting faces to voices. His periods of being upset were … Continue reading March 10, 2024
March 9, 2024
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
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
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 … Continue reading February 27, 2024
February 26, 2024 – Update 1
Not much to say so far. David received a bronch this morning and it seemed to clear out his lungs a little bit. Neurology has not seen any seizure activity so far. Around 3:30, David was taken back to the operating room to attempt ECMO decannulation. It sounds like, David still was not able to … Continue reading February 26, 2024 – Update 1
February 22, 2024
David has had an up and down day. Overall, I think he's still in pretty good shape, but he has definitely not given his nurse a lot of down time today (or ever really). David's big goals of the day were to continue to work on getting his lungs opened up, diurese him (lose some … Continue reading February 22, 2024
February 21, 2024
So, there are certain words we don't use around David anymore, and no one trusts him either. He likes to prove everyone wrong, both good and bad. We are one week post-surgery today, and we made steps in the right direction - David is off ECMO! He's maintaining all on his own his blood pressure, … Continue reading February 21, 2024
February 20, 2024
We'll take the wins where we can get them, and today we had some small wins. David continued to have seizures last night. After adding a third seizure medication, they have not noticed any more since 11 PM last night. All the seizure activity has been isolated to the area where there is blood in … Continue reading February 20, 2024