It's just cosmetic

I was just asking the nurse why she thinks Caelen's face looks blue, and she said its probably the shunted blood. He just has so much de-oxygenated blood right now, that until that shunt totally clots off he's going to be on the bluer side. She said, "structurally, he's fine." So I laughed and said, it's just cosmetic, kind of like a retaining wall with a big crack. Structurally, it's fine, but unnerving to see.

My sense of humor is getting more pathetic, I know.

But you're here for a Caelen update, so on to it. He is still having these random desaturating moments, and at times we have to go back up on the oxygen. He'll do really well on lower vent settings, well enough to extubate, and then there's an episode and the tube has to stay in. The good news is that the junk coming out of his lungs is a lot thinner and stuff that he can cough up once extubated. So this means his lungs are healing from the plastic bronchitis. But there's no data to show just how long it will take to clear. Kind of like his chronic lung disease. At some point, he'll be discharged home but his lungs will still be healing.

And for those that have been asking, discharge and timing are not conversations anyone has. We take each day as they come. Caelen has taught us that he doesn't do anything according to plan, so the team doesn't give us time frames on anything.

He's being kept sedated most of the day because he fights when awake and tries to pull out his breathing tube. But he isn't paralyzed, so he still wakes appropriately with care. I'm sure we've set ourselves up for another wean, but we've done it before and we can do it again.

So that's it. We're sitting around staring at Caelen and monitors and I've read all of his books too many times to count. I'm sure he's having crazy trippy halloween dreams.

Thanks to all for the care packages and books. Please keep praying.

Love,
Katye