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| Everything the light touches, is our kingdom |
Amidst all the exciting current events, our young hero continues to kick some booty. We've had more appointments than I can count since last we talked, but things still move much more slowly once you're at home. One thing that Ezekiel does continue to make progress on is what I like to call his prime directive: giving me an ulcer. We've had a few scares, an emergency appointment, and other sorts of excitement, but nothing has turned into a terribly big issue. My growing ulcer notwithstanding.
One of the bigger incidents was a set of lab results that were way out of whack. The main culprit was his BUN. This is a value that measures waste product in his blood and was what they used as a marker for when he needed to start dialysis. It also tells them how effectively his dialysis is working. Someone with normal kidney function will have a BUN of less than 10. Ezekiel, and other people in kidney failure, will have an elevated BUN. He usually hovers in the 30-60 range. Two weeks ago him BUN was 130. That's 22 points higher than when he started dialysis for the very first time back in the NICU. A BUN that high will make you feel sick and that was definitely the case for Ezekiel. Thankfully, after some changes to his dialysis prescription, his BUN did eventually drop back within acceptable ranges, but it took a couple weeks. This is what I mean when I talk about my ulcer. It's stuff like this that gets sorted out eventually and doesn't even really make that great of a story, but it's gotta be there, taunting me. There are a few other stories like that, but they all follow this formula: (X being everyone's favorite variable) We noticed X. We got really worried about X. We called the appropriate specialty about X. They had us come in so they could look at X. They didn't think X was bad enough to do anything specific. They asked us to keep and eye on X for a few days and let them know if anything else happened. A few days later, X was gone/stopped happening. Great story, eh!?
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| I can finally roll over! |
There's still not much to update you on the lung front. He will still go weeks without needing oxygen, but so far he hasn't made it longer than that. We have an appointment with Zeke's primary lung doctor this coming week, so we hope to have more to report after that.
On the developmental front, our young hero continues to hone his skills. After he came home, Zeke really seemed to plateau with his physical and oral development, but we've since gotten some professional help on both fronts and he's responding very well to the therapy. He even seems to have a good time while doing it!
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| Zeke loves showing off at physical therapy |
He's also working on growing some teeth. He's had lumps on his gums for almost 2 months now, but those little runts have refused to burst through. With Zeke's oral aversion, he doesn't take much for teething toys, so he mostly just powers through.
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| Delicious peas! |
I think that's about it for now. Not a terribly exciting update, but an update none the less.
