February 18, 2024

Today was exactly what we wanted for David – a day of rest. He is starting to build a tolerance to the sedatives it seems. If he so much as moves his fingers or toes, his blood pressure becomes hypotensive, so they have adjusted those to make sure he is calm. Yesterday, he would go hypotensive and then swing hypertensive. He was very hard to regulate. This morning, they put him on a no turn order to avoid him encountering any swings; however, it did make it hard for his nurse to check his skin on the areas touching the bed. 

Neurology stopped by today. They have not noticed any seizure activity so far, which is excellent. They may keep his EEG probes on for another day to continue to monitor. The less encouraging news is that his brain activity is slow. This is not super surprising though after everything that had gone yesterday. Just like his heart and lungs are resting, his brain may be using the time to rest as well. Also, the sedatives could be playing a role. So, they will continue to monitor and hopefully the brain activity returns to normal function soon. 

Otherwise, David behaved himself today. His heart is beating and doing some work even though nothing is being asked of it. David’s heart and lung function are 100% supported by ECMO. There was a time today where his heart was beating at a rate that is normal for him while sleeping and his blood pressure looked great at that time too. However, eventually his heart rate went to something slower, which is fine because it can rest. His ventilator settings are very low as well – he’s getting some air to keep the air pockets open but otherwise, his lungs don’t need to do anything.

I had just returned to the room to grab my water bottle for dinner, and was going to meet everyone else in the cafeteria, and as I entered the room saw that his lungs were no longer getting anything from the ventilator. His nurse said she had just repositioned his head as his pillow under it was covered in blood so they got a fresh pillowcase for him. They wanted to suction him when that happened, but I was not going to leave the room until after that suction – there’s still some trauma from yesterday. Yesterday, I grabbed my water bottle while Eli waited outside the room. We chatted with some nurses in the hallway, grabbed some plates from the lounge, and as soon as we stepped off the elevator to the cafeteria we heard the announcement that David had gone into cardiac arrest. It happened so quickly. Even though David is fully supported today, I didn’t want to risk grabbing my water bottle and then stepping off the elevator to hear the alarm again. So after he was suctioned, his lungs were able to get some air from the ventilator again so I felt much better about joining everyone for dinner. 

We are so thankful to his nurses who took care of him yesterday and again today. He definitely is keeping everyone busy. He has some oozy discharge, which will hopefully stay under control, otherwise they surgeon may be called back to check on the ECMO cannulas. They’ve been giving him platelets to help with this, but administering it has also been walking a fine line with David. Too fast and it may have messed with his blood pressure – so they paused it and waited for him to settle out and then restarted it at a slower rate. He was peeing off fluids like a champ this morning, so they stopped his diuretic. However, then the peeing seemed to stop too, so that’s been restarted and so has his peeing. That’s also reassuring that his kidneys are still functioning.

Otherwise, David is looking real good – good coloration and he’s lost a lot of excess fluid. All the nurses comment on how cute he is. I was also thinking that this is the first time since he’s been born, that he has fully oxygenated blood moving throughout his body. We’re hoping David continues to rest and heal again tomorrow so that his heart will be stronger and ready to support him.