We’re still here, still hanging out, still on way too much oxygen.
Every day seems to go the same way. We’ve weaned the oxygen down to a manageable amount overnight, and the plan is to watch, try to keep him there, and go home in the morning.
But then the day happens, I guess you could say, “life happens.” He wakes up, plays, needs more and more (and sometimes more) oxygen. And we’re quickly back to where we’re maxed out on what the home vent can deliver, much more than we can deliver for any significant amount of time at home.
He’s finished his antibiotics. He’s pretty much “hanging out.” We’ve tried increasing his PEEP (the pressure that’s always in your lungs) to see if that helps. It really hasn’t done much at all.
Albuterol has helped, kinda, but last night we decided to up it to see if maybe it could do more than it was. He started getting it every three hours instead of every six, with the plan that if it did seem to improve, we’d consider steroids as well. If he’s not oxygenating because his lungs are reactive (asthma), steroids can also help. But the downside is that steroids decrease the body’s immune system, making it harder to fight off infection, and easier to get one. And that goes for both bacterial and viral infections. (Can I just put him in a bubble?)
Albuterol did seem to help, quite a bit overnight, so now we have orders for a five day course of steroids. IF he reacts the way he has in the past, we really might come home tomorrow. Pretty big “if.”
But as William keeps reminding me, we’ll just do what is best for him. We’ll give him the time he needs, be grateful for the time we have with him.
Last night I climbed in bed with him to sing him a bedtime song. Big mistake if I thought it would help him go to sleep. Instead, he took it as a sign that the party was just getting going! Funny kid. So we sang for about an hour. But as I sang the last line of “Edelwiess” I choked up. I have no doubt that this little boy will bless our home life forever. I hope we have many more days with him here on this side before he goes “home.” But I do know he’s ours, forever and ever and ever. And the lessons he teaches us will be with us just as long.