Thursday, January 04, 2007

well crap.

As some of you know, my son Joey has cystic fibrosis. It's a genetic disease that affects the lungs, digestive organs, in his case sinuses, and eventually causes problems with the rest of him. It sucks. For the past few years, he's been so healthy that we pretty much forget about it. He just takes a few extra medicines, does his "shaking" a vest that uses air vibrations to shake the piss out of him which helps break up congestion in the lungs. His last few checkups have been so good. We've always been told Joey's "the healthiest cf kid in kansas city." Well, not anymore.

It's nothing huge, nothing horrendous, but it's just dropped me like a rock today. I got a call from the CF Clinic at Children's Mercy where we go for his stuff. The throat culture he took showed pseudomonas aeruginosa. It's a antibiotic-resistant bug that gets into cf lungs and causes problems. Most cf kids catch their first case of it by the age of 10, and it keeps coming back over and over and stronger and stronger throughout their lives. It's not the big bad cf infection, that's the B cepacia, which you don't even want to hear the word when you're a cf parent, let me tell you. That's the bad one, that's the one who's parents are supposed to be crying and freaking out, not for the regular pseudomonas.

To fight the pseudomonas, Joey will take a series of 2x a day inhaled super antibiotics called Tobi (Tobramyacin) that targets this particular bug along with an oral medication called cypro. He comes in more often for tests and such and there's good hope that he'll be able to almost irradicate it since they caught it so early. It will come back over and over and be harder to get rid of each time and will eventually damage his lungs. His lungs are very good, operating at 98% function, which is better than most normal people's lungs. The tobi will help preserve lung function and it's all a great exciting thing because these drugs didn't exist a few years ago and cf kids would get sick and die very young. It's all very exciting, but it still really really SUCKS.

I was so proud of Joey's health, I just kept telling myself and everyone that would listen, "oh, yes, he has cf, but he's so healthy now, we're just going to keep him that way." "No, you would never know anything's wrong just to look at him." I think I knew something was brewing because he's just not been quite himself for the last month. He just didn't have the umph he normally has. I don't know why I'm so shocked, but I feel like the first time he was diagnosed as an infant. That horrible feeling that the baby you're holding has something wrong that you can't fix. I think I'm freaking out because this is really the first sign that he's just like the other cf kids. I'm afraid I was feeling a bit superior or super-blessed or something. "Yes, Joey has cf, but he's never had pseudomonas..." kid of biting me in the ass now, huh?

We've got a good game plan. We've got medicines called in and on their way. We'll increase his vest treatments and get the stuff done in a way that will minimize the time he spends having to sit around doing meds. We're going into clinic on a monthly basis to test the levels of the pseudomonas to make sure we're getting this first batch gone as quickly as possible. He's got a great care team at CMH and they're very aggressive in their work and love Joey as much as I do. I won't be one of those parents who lets the kid become "the sick one", he's still just Joey. It's all positive, they caught it early, his lungs are so good now they're not even going to have to hospitalize him for iv antibiotics or anything.....blah blah blah. I believe it, I'm just feeling kind of crappy, have a headach and am OUT OF FREAKING DIET COKE!!! and have a big project due at work. damn damn damn

I'm going to finish the damn project for work, take myself out to Chipotle for some damn guacamole and chips and steak burrito bowl and BIG ASS damn diet coke and then sit down and watch Little House on the Prairie on the Hallmark Channel later this afternoon and knit my damn socks.

I really am feeling better and it's really not a big deal. I just feel like most of you guys are my extended knitting group/circle of friends and I needed to vent bigtime. Thanks for listening. Thanks for keeping Joey in your thoughts and prayers. I deeply appreciate it.

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