The Big Day

Tomorrow is the day that has felt like it’s taken a YEAR to come. Yes, it’s finally the Cystic Fibrosis test. FINALLY. Seriously, I can not tell you the amount of relief and stress i’m feeling at the same time right now. In less than 12 hours, the test will be done. The one every doctor we’ve seen has absolutely insisted we have before they’ll even consider there’s another issue- the one i’ve fought tooth and nail against to skip and move on to something more logical? Is finally tomorrow.

It’s not that I was SO against having Parker tested for CF, although it may have sounded like it. I would have been fine if they had gotten us in in.. I dunno, a week? even two weeks? But it’s taken TWO months to fit us in to get this done, when technically, if Parker has CF- (from the nurse’s mouth) “yes he could be dying”- which sounds dramatic, but CF sufferers NEED medication for their pancreas. They need an enhanced formula/diet to make sure they don’t lose weight (especially a 5-6 month old). It’s insane we’ve been forced to wait so long for a test they say is so important.

So tomorrow feels like a long time coming. I still don’t really think it will come back positive, but at least if it does or doesn’t, either we’ll finally have answers or we’ll FINALLY be able to move on to something else- because no one we’ve been to will even take anything else into consideration.
I was 100% sure he didn’t have it until a few days ago when the raspy breathing and coughing came back (of course, just as his appetite finally returned). So not only is it a good thing we’re finally getting the testing out of the way, but it’s good that we’re seeing the pulmonologist again for a follow up to ask MORE questions.

I just wonder, if it took them so long to just get us an appointment for a test, how long will it take to get the results back? I’m so sick of waiting and waiting. Going to doctor after doctor and just being told to wait it out, keep doing what you’re doing, get the testing done, blah blah blah. It’s frustrating and annoying.
I’m just ready for this whole situation to be over. Or at least to know WHAT it is and how to deal with it. Once Parker is 6 months in just week or so, he’ll have been sick for half of his life. That’s just not fair to him at all.

Cross your fingers it’s not CF, but also that we get SOME kind of answer on what it IS.
SOMETHING, instead of “just keep doing what you’re doing and eventually he’ll get better”- at some point- they have to realize that answer isn’t enough.

So, bright and early, off we go to CHKD.. which is a good 45 minutes away. I am not a morning person, and keeping a 5 month old still for over 30 minutes so they can put electrodes on him to make him sweat i’m SURE is not going to be a pleasant experience.
I probably won’t have answers tomorrow, but you can bet i’ll let you know how it went.

Posted on March 23, 2010 by Holdin' Holden 0 Comment
Holdin' Holden

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