--The Who, "Tommy can you hear me?"
Don't worry we are not intentionally keeping you on the edge of your seat by withholding updates on Jay. It is just there is only so much we can write about beeping (all the pumps and monitors) and sleeping (Jay).
Overall, Jay is about the same as yesterday. They did not tweak any of his meds down today, but being Sunday, I don't think there is a big rush to do too much until tomorrow. His blood pressure is a bit lower today than yesterday since decreasing some meds (another reason to not tweak them further), but it's still in the acceptable range. His heart rhythm is normal and he hasn't had any more fevers. After increasing his heparin dose once or twice a day since coming off ECMO, he is finally at a therapeutic level for his heart valve.
He does have a couple lingering problems. He has an area of his lungs that is not inflating properly on the ventilator. It could be due to his breathing tube being a little malpositioned (though they have moved it about 4 times to make it better), or the gunk that builds up in his chest just from being on the vent. With chest physical therapy (aka the jackhammer), changing the vent settings, and position changes, it seems to be getting better, but isn't gone yet.
His other problem is in the pooping department, and the problem is that there isn't any, and hasn't been any since surgery. That's a week and a half without pooping. Granted he hasn't been fed much, but he has been getting some food through a feeding tube since surgery. So far miralax, colace, and suppositories have all failed. We keep hoping that the next time they take his temperature, he's going to break forth, but so far no luck.
Jay is spending most of the time sleeping and will periodically open his eyes to look around when the nurses are doing things with him. He also will sometimes respond to commands. Considering he's two, listening some of the time is pretty darn good. He will open his mouth when asked to allow the nurse to suction the gunk that builds up in his breathing tube. He hates it, but he will do it when asked. Today the nurse asked if he wanted to be suctioned again, and he feebly shook his head no, buying himself a brief reprieve.
We can get a finger squeeze periodically if we ask, and occasionally see glimpses of the old Jay through the sedatives and morphine. This afternoon, we were reading one of his new favorite books, Duck on a Bike (Thanks David B.!). For those of you not familiar with the book (if you have small kids, you need to get it!), the duck rides by all the farm animals and they respond "Moo," "Baa," "Neigh," etc. These are Jay's lines, so I paused each time to see if he would try. I got nothing on the cow or sheep, but when I got to the dog, he mouthed "Woof." Later, I went to tuck Cow Lovey under his left arm, and he got quite upset and pushed him away. I asked, "Do you want Lovey under your other arm?" and got a weak nod. So I put him under his right arm, and he immediately grabbed his little fuzzy hand and gave it a squeeze. That's where Lovey is still sleeping, and hopefully they have a quiet night together.