Tuesday, October 11, 2011

CF Update.....

Last Thursday, Rylan had her big annual CF appointment. They are the ones I dread....even more than the normal 3 month ones. In addition to visits from every doctor/dietician/social worker on the team, we also get to throw blood draws and x-rays in there. Blood draws and 3 year old little girls just don't go hand in hand. BUT.....this little peanut never ceases to amaze me. She did FABULOUS. We talked about the blood draw during the car ride to the hospital, in the hopes it would 'prepare' her for what was to come. You can imagine how well THAT went over. When a child hears "They are just going to poke you really fast, so they can test some things in your blood. And you'll get STICKERS! Lots and LOTS of stickers!!"....all they hear is "Blah blah blah, POKE, blah blah blah, BLOOD". There are few things worse than hearing that sweet little voice plead with me, "Please, Mommy. I don't waaaant to."

Trust me, baby, Mommy doesn't want it either. Not any of it.

7 viles of blood, 10 seconds of tears, and 17 princess stickers later....we were at the elevators heading up to x-rays. Only 10 seconds of tears! I couldn't believe it. My advice to anyone else out there with little ones and needles.....prepare them. Don't overdo it, but tell them what's going to happen before they're sitting in the chair with a stranger and a needle in front of them (I learned my lesson last year). Have them watch. Rylan didn't start crying until that initial poke and only cried long enough to decide it wasn't so bad...which literally was moments later. I was shocked to say the least. After we got our stickers and were standing at the elevators, she looked up at me (VERY proud of herself) and said, "Mommy! They didn't even get any BLOOD on me!" My little diva princess, more concerned about getting anything yucky on her outfit than having a needle in her arm :)

We got the results from everything today.....and her throat culture showed NO PSEUDOMONAS!! It showed only a slight growth of Staph (which is normal for her) and since she's not showing any symptoms, we made the decision not to treat it. (You can see a detailed reason of why we hate pseudomonas here) Her BMI is holding steady at the 30% range, so our dietician was pleased. We would all love to see that reach 50% or higher, but as long as we're over 25%, we're on target. I've explained in previous posts that she is pancreatic sufficient, so although increased weight would be a good thing....we're not alarmed with where she is.

On to the chest x-rays...they said they want to schedule a CT within the next couple of months to get a better look at things. Apparently, the lower left lobe was not completed inflated. They went on to say that at the time of the x-ray her tummy was full of air, so this could possibly be the reason....but regardless, they want to do the CT just for good measure. They also noted there was some airway dialation in the upper right lobe, but this is common in CF'ers....so not a cause for concern. At least that's what the doctor notated. Unfortunately to me, any report other than 'Your daughter's lungs look PERFECT' is a cause for concern. Maybe not a huge concern, but until we get the CT done and have some definite answers, I'll be sending up a few extra prayers. Ok, maybe a thousand extra prayers. I'm happy that the doctors aren't concerned (hence the waiting a couple of months to retest), but this mama can't wait that long. The nurse is calling me back to set up the appointment :)

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