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 in his room until about 11 last night – he invited his nurse and all his doctor friends to come hang out with him, which daddy was relegated to the back of the room in order to give them all space.

After having low potassium levels for so long, last night David swung the other direction and had super high potassium levels.  Potassium has electrolytes that help the heart beat, so too much or too little can cause David to have arrhythmia. They attempted to use the his pacer to help his rhythm before they had received his potassium lab results, but things kept treading in the wrong direction. David did not need chest compressions, but the crash cart was pulled out and they were prepared if David kept trending downward, but his heart rate and other numbers were never critically low as they managed to intervene in time to keep them from going there.  They gave him a diluted dose of epinephrine to keep his heart function and insulin to lower his potassium, and then glucose and calcium to counterbalance the insulin from lowering those too much. After this, they stopped his feeds and his potassium supplements and they are watching his potassium levels extra closely and proceeding cautiously.  There was lots of talk today about how everyone was optimistic about the progress David had been making, and even if they don’t tell it to him, he does something that causes a step backward. 

Today it was still unknown what caused his potassium to spike the other way, but he has been in a very good spot with it since the spike last night. He no longer has his foley, so they can’t measure his urine output as closely, but they know he had less output over a period. So, was he holding in extra potassium in his kidneys? They reviewed every dose of potassium and potassium supplements he received yesterday to try to figure out if any of it was more than any other time, but everything seemed normal. Due to all the unknowns about that spike, they did minor changes to David today and hoped to just give him a calm day. They slowly resumed his feeds, once again at half the rate before getting the full rate this afternoon. They still want to diurese him, which causes him to pee out potassium, so instead of getting the supplement through his feeding tube, they decided to move that one back to his IV. Everyone’s body absorbs potassium differently, and what may take someone an hour to absorb, might take another person several hours – so moving it to the IV removes that time difference – it just gives David slightly more fluid input again. 

Anyway, after last night’s shenanigans, David had a good day today. He did get to rest. I also saw him move his left leg for the first time in a long time. That was very exciting! And he moved it quite a bit when he was moving it. He’s also been moving his left arm more the last several days. That side definitely has some weakness, but as he gets fluid off, it brings hope seeing him move those limbs again. He has also been opening his eyes more, and as he has lost fluid, has been able to open his left eye more fully as well. 

David also rocked his pressure support trials. He spent 4 hours on his first one. He receives respiratory therapy every 4 hours, and they couldn’t believe he was still on it when he came back, and his labs all looked great which corroborated the numbers they were seeing based on the sensors. The decided to take him off the pressure support trial even though he was doing so well, just to give him a break. He was rocking the one he was doing this evening too! During the first one, OT came by and worked him out, and he tolerated everything they did. They were even able to move him into a sitting position and he didn’t complain and he was able to sit up (with support of course) for a while as well. 

We never want to jinx anything with David, but today seemed to go well. David seems to listen to everything that is discussed, so we can never let him know the plan because he also interjects with his own plan. However, after last night, there’s a little worry that his hearing is even better than we thought and he can hear conversations in other areas of the hospital, or that he can read minds. His nurse, NP, and cardiologist all think that is probably his super power. Other super powers David seems to exhibit are holding his breath, and turning a rainbow of colors. He’s ready for super hero day tomorrow, and hopefully he doesn’t show us all his super powers (or come up with some new ones).