Saturday, August 23, 2014

RTA update

Me returning a call: Hello! How ARE you?
Man: Good. You?
Me: Doing fine. ... wait, is this Steve?
Man: Who?
Me: Steve?
Man: No. This is Alex.
Me: (wracking my brain for any Alex I know) Oh... um... I think I got the wrong number.
Man: Dr. Alex
Me: OH!!! Jonathan's nephrologist!  Sorry. I recognized the number and thought it was my husband. ... He just got a new job and I thought this was his work phone.
Dr. Alex: I wondered why you were so excited to be hearing from me. I just sent you an email, too. Wanted to let you know Jonathan's renal panel looked great. His HC03 is up to 26. So keep the dosage the same.
Me: That's exciting, too. ... Sorry about that, again.

I need to program Steve's new work number into my phone.

Embarrassing conversation aside, I was excited to hear from Dr. Alex. Maybe not as excited as if it were Steve, but who can blame me?

There's a reason I recognized Dr. Alex's number (that's not his real name, but you probably already figured that one out). We've chatted a lot over the past month. And truth be told, I am happier and happier to hear from him. He's had to change Jonathan's dose of renal medication once, but since then, my son has turned into one thriving little man.

He's only gained a pound since we started treatment for his renal tubular acidosis a month and a half ago but he's gained so much else that we're bouncing from excitement.  And considering he couldn't gain even a pound all winter long, we're quite happy with a pound in a month and a half.

Things gained:
Regular BMs

He's bouncing off the walls. He's so much more interested in learning things. He's not walking around in a tired stupor any more. It's not surprising that he hasn't gained as much weight as we'd hoped -- he's burning off all those correctly metabolized calories in learning to do all the things he only wished he could do before.

Continued struggles:
Gag reflex. It's too strong. That boy gags too well. I continue to use the techniques we learned in feeding therapy to help him be willing to experience new textures and foods, but it's a struggle. Crying will also induce the gag reflex, so an accidental bonk of the head often means a misplaced lunch on the floor. We are so glad we bought a home with wood floors.

Chronic lung disease / BPD. We don't talk about this often, but it's still there. It's the middle of the summer, so we didn't expect to see a ton of it, but it's also the middle of the summer, so his pulminologist thought we might want to try a half dose of his steroid.

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