The PICU put him on iNO (inhaled Nitric Oxide) on Saturday to try to get the oxygen into his tight, stiff lungs. By Monday he was more stable which led to them trying to wean it. We started on Saturday at 20ppm and weaning is a slow process, done in steps, each trial being about six hours.
Monday they tried to turn him to 15ppm. He did really well for about 5+ hours, then nope! He went back to 20.
Tuesday we tried again and this time made it to 15. But an hour into his next step at 10, he reminded us who is in charge, and it's not us! Back to 15.
By Wednesday, his cardio weighed in. (She's actually out of town at a conference where she's presenting, but she still checked in for consult. How lucky are we?) She had been looking at his labs and meds and everything and wanted him to have up to two units of packed red blood cells. Yes, we did this back in December. But his crit and hemoglobin had dropped anyway. He wasn't crazy low. In fact, he was basically on the low end of normal. But cardio kids tend to do better when they're on the high end of normal, or even higher.
Once again, it seems to have been infused with pixie dust. He only got one unit but it brought him way up and woke him up, and made him mischievous. He's been undressed most of the time, mostly due to fevers but those stopped a few days ago. But it's easier to see work of breathing and color and everything else if the child is not clothed. Today when I got back from my internship, he had a sneaky grin on his face and he was in jammies. His nurse confirmed they'd put clothes on in an effort to keep him from pulling his leads off and his g-tube out. Yep, he's back to causing trouble!
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| Yes, he has a black eye. He did it to himself. |
So how do we get home? Well, he's still on 2ppm so we have two more steps to get off the iNO. Then we have to make the jump back to his home vent. It looks like that will be pretty easy, but then, again, we haven't exactly gotten his sign off. We also need to wean one of his inhaled meds back from every 4 hours to every 6.
There are a few more steps before we get out, but I'm cautiously optimistic that it will happen this weekend, probably Sunday.
And I'm so grateful. Hospital stays are hard, not just physically but emotionally as well. When we get to the point where I can't sustain him at home, that means he's kinda precarious. One sibling called last week after I texted family to ask if she needed to be within cell phone range while out with friends. She was worried that things might change that quickly. I assured her (and was confident in my assurance) that nothing would be happening that night. I hoped, and was again, cautiously optimistic, that we would be able to work through things and come home.
No one is guaranteed tomorrow, least of all someone who outlived their life expectancy over 12 1/2 years ago. I'm reminded almost daily as others move on to their heavenly homes. It's a refining process to witness those heartaches, knowing that someday ours will come too.
I've said before, I don't know why we've been spared when others have not. It's certainly not because he's loved more than they were, although he is loved beyond measure. If loved saved babies, they would live forever.
So we'll treasure the time we have, be grateful for the opportunity to make more memories, so grateful for yet another reprieve.
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