No news is NOT better than good news

Well, now that my computer has stopped acting like a complete idiot, I can tell you about the massive amount of BS we dealt with yesterday.. and still today, and I doubt it’s going to change for a while.

The waking up at the ass crack of dawn obviously wasn’t a high point in the day, but that I could deal with if it meant getting some sort of means to an end of this entire ridiculous situation.

Probably should have taken it as a sign when we get called back for the ultrasound and the first thing the tech says to us is “because of policy I can’t tell you anything during the ultrasound”
Seriously? So.. basically, no, we won’t be getting any answers.
Thirty minutes of her rolling that scanner around his stomach and his back, looking at blobs on the screen and the only thing she bothers to say is “didn’t anyone tell you not to feed him before this scan?”
NO. Do people not realize by now that NO ONE tells us ANYTHING? Of course they didn’t tell us not to feed him.
Oh, and she also asked if he would take a pacifier, because of course after 30 minutes of being forced to lay in one position he was going to cry. No, he doesn’t take a pacifier. Get over it.

I’d still held on to hope that MAYBE we’d at least get to talk to a doctor after the scan. Nope. We got nothing but another long wait in the waiting room so she could show the pictures she took to some random doctor to be told they were good enough to send to another CITY to be shown to ANOTHER doctor.. and then THAT would be reported to the GI, and then HE would call us with the results.
And guess what day yesterday was? Wednesday. The “only day he makes calls.”
Fat damn chance we’d be getting a call that night, that’s what I said.

Along with the wait, hoping and praying for a phonecall.. was the return of full blown thrush. Yep, for a third time.
And seriously, if anyone starts in with any shit about “oh well if you cleaned his inhaler” or “maybe you should swab his mouth out” I really might dropkick you. No one has any idea how diligent we were with cleaning out his mouth and cleaning his inhaler. Didn’t matter. Just like I said last time. Not all the cleaning and swabbing in the world can apparently keep this kid from getting thrush. And it’s not just thrush, it’s BLEEDING thrush. Can you imagine what that will do to a kid’s want to eat, when he doesn’t really even want to eat in the first place?

So that was another doctor we had to deal with in one day. First doctor to call, out of all of them, is the pulmonologist.. since this persistent thrush didn’t start until he was put on flovent. So we ask to switch. Nope. Not gonna happen. We’re told ALL inhalers could possibly cause thrush and if he’s getting it so often it “has to be something else causing it.”
Yeah, ’cause i’m going to trust the people who missed the enlarged spleen. Not saying it’s impossible.. but why should I believe them now? He got thrush ONE time before. Never again until he was put on flovent and now he’s gotten it twice in under 2 months. To me, that’s a direct line between flovent and thrush. Oh but i’m just a stupid parent! Ignore me!
Whatever, they won’t switch his inhaler. How about some diflucan to clear up the thrush?
Nope. They refuse to prescribe it. They will ONLY prescribe nystatin. Hey, morons, this is our third time with thrush, fourth/fifth if you count Holden. Nystatin has not worked ONE single time we’ve used it on EITHER child. It’s not going to work now. Give us what works.
“You’re going to have to call your PCP to ask for that”

Son of a…

And by the time we finally got THAT answer, it was too damn late to call any other doctor. And of course, did you guess? No call from the GI. And since Wednesday was now over, it was gonna be a whole other week until we got ANY kind of answers about what, if anything, came back on all those tests and what it could mean.


So today we call the PCP, only to be told that THEY won’t prescribe diflucan either because of Parker’s elevated liver enzymes.. because diflucan can further increase liver enzymes. We’ll have to call the GI to see what he wants to prescribe. Lovely, Mr. “I don’t ever take phone calls” is going to be the one to make the decision.. if we can ever get a hold of him. Meanwhile, you should see Parker’s mouth. I don’t care if doctors say thrush isn’t painful, his mouth is clearly hurting.

What do we do now? We wait. AGAIN. Sure, we can call and talk to a nurse who will tell us what the test results are- but it won’t do us any good. We’re not doctors. She could say a number of things are wrong but can’t tell us how to treat it or what it all means. It all has to come from the GI.

Guess it’s pretty pointless to say that i’m pissed. Doesn’t even begin to describe how i’m feeling right now.
You’d think answers wouldn’t be so much to ask for. With everything Parker has been through he should be a priority.. somehow he isn’t. Not to anyone but us anyways.

Posted on May 13, 2010 by Holdin' Holden 0 Comment
Holdin' Holden

About Holdin' Holden