Wednesday, August 31, 2011

You Shouldn't Have to Jump for Joy

My running joke in San Diego was my the tagline of my blog should be, it's not suppose to be a medical blog.

'Cause, woe, that's where we are. A fucking medical blog 'cause all I can talk about is HEALTH.

I wish this wasn't the dead-center of my life. I wish we weren't going through this. I wish I could easily talking about the holiday quilt I'm making for the family, because it's soft and pretty and lovely and almost ready to head to the quilter but that's not the focus of my life right now.

The focus is getting all of Emerson's health-shit figured out. I do not enjoy lotioning him hourly. Or how we can't go anywhere because his ability to catch a secondary infection is so high, we haven't even been to "church" in months 'cause we have to keep his exposure down. Or how about his weight and height are so low, doctors think he's starving and "failing to thrive" (oh, he's thriving just fine, that's what they call it when weight consistently goes down on the curve). Or his itchiness. His goddamn itchiness that interrupts everything, screaming in the night 'cause he's itching in his sleep and causing himself to bleed everywhere and all his cries ask are why? what's happening? why am I hurting? and there's not a damn thing his parents can do other that swipe him with more lotions and shove more medicines down his throat.

This is the center of my world right now. And yeah, I'm barely blogging because I can take making fun of this crap only so far. 'Cause it's most certainly not funny.

We've started another whole new routine; the new theory is his acid reflux is eating away his skin. Yes, you heard that - eating away his skin.

So more acid reflux medicine, putting (of all things) butt paste containing Zinc Oxide on his face. Fuck me backwards, Batman, it's working. Not fully-completely-healed, but helping.

I really looking forward to him starting to outgrow all this hullabaloo. Griffin and Darwin had similar (but not exact) circumstances, but we have a couple of more years until the relief comes.

Years. Oh, how I do hope it's not years.


LJ said...

can you ask your doctor about calmoseptine. it's good stuff i used to use it for aaron's feeding stoma (hole where his feeding tube is) when he was younger he had bad acid reflux but it was coming from there. his stomach looked like E;s face. poor guy. so this medicated cream worked well!!

amy h said...

I hope it's not years! All that itching must drive him (and you) batty. I'm glad you are able to mostly keep your sense of humor about it though, because without that, eek.

Rebecca F. said...

I know that people end up thinking that everyone else has had exactly what their child had but..... Have you had Emery's neutrophils checked? Has he had any blood work that would check his absolute neutrophil count?

Sharon said...

Not being able to help your child who's in pain must be the worst feeling a parent can face. My thoughts are with you.

jac said...

Aw Emerson! Hope he feels better soon...