Yes, we're still here. "Here" as in "here in the PICU."
Every night, and for that matter, every morning at rounds, he's looking pretty okay. He's still pretty high for home but we can certainly plan on going to the floor. The problem is that when we talk about this, he's sleeping. See, his idea of a perfect sleep time is 2 am to noon. (I think I know others who feel the same way.) And when he's sleeping, he's not needing as much oxygen, so he looks really good on seven liters.
But then he wakes up and starts moving around. And his heart will start shunting more unoxygenated blood through the holes in his lower chamber, which causes his sats to drop. So we turn him up. He gets more active, he needs more, and so it goes. He'll actually be stable at seven to eight liters for quite a while, but it creeps up, every, single, night.
Once again last night he was on 12 liters and struggling to get out of the low 80's, so we had to bag him, again, and yep, he's still sitting here, waiting for something. The problem is, he won't tell us what it is.
(Can you tell I'm starting to get a little frustrated?)
Anyway, March is over and spring is supposedly here. Spring with all the new life and new hope. It's also "Give Life" month. Yesterday, I was able to listen as a dear friend spoke at a flag raising about her daughter's heart, her second heart, a heart that beats for her after her own tattered heart was too tired to go on, and the beauty of that gift for their family.
I urge you, if you haven't taken the moment to become a donor, please do so. You can give so much to others. Even Aaron will be able to donate what organs are still viable. Save a life, save a family. Find hope in your own heartbreak. Live on through others.