Tuesday, November 16, 2010

1st Infant PFT a SUCCESS!!!

So, let me start off by saying.....THIS WEEKEND WAS AMAZING!!!! WOW WOW WOW. Friday, the gals and I drove up to Minneapolis early to sqeeze in some IKEA time before the weekend's festivities. That evening we had the INCREDIBLE pleasure of meeting Josh and Carly Mogren of Welcome to Joshland fame :) IF you are not familiar with Welcome to Joshland, I INSIST you check out his site. Besides being honest, optimistic and just an all-around cool guy, Josh has a fabulous YouTube site that is dedicated to teaching kids (and people of all ages) about cystic fibrosis. Using humor and a crazy puppet named Moganko, Josh teaches kids the ins and outs of CF and, more importantly, how to have a great sense of humor and HAVE FUN with life. Big hugs to you, Josh and Carly! Thanks for the laughs!

Meet Moganko!! And just a little FYI.....Willow Smith has NOTHING on Moganko! That little puppet REALLY knows how to whip his hair.

Life is good. Really, really good.

So, onto Part 2 of the weekend. Remember that part I was SOOOOO nervous about? PIECE. OF. CAKE. Everyone's mood going into the infant PFT couldn't have been better, the procedure itself couldn't have gone better, AND the results couldn't have been better. We could have all used a little more sleep, but if sleep deprivation was the worst thing to come out of the weekend, well hey. NO SWEAT.

Our special 'night before procedure' dinner celebration. Someone was a little excited about being the center of attention.....

After a quick call to Nana's house to say good night to Bubby, we were all ready to call it a night.....

We were up by 6am doing treatments and all checked in to the hospital by 8am. Daddy and I were fully prepared for a miserable morning, seeing as though the little monkey was operating on only 6 hours of sleep. BUT, she was amazing, bless her little heart. She knew. She knew Mommy and Daddy needed her to be strong and she pulled through, of course. Here's a basic breakdown of the procedure.....1st came the drugs. 3 syringes of some pretty nasty tasting medicine later, Rylan was really (REALLY) sleepy. After she was conked out, they put a little vest on her and whisked her away to the procedure room. There she was placed in a small Plexiglas bed with a mask suctioned over her mouth and nose. This mask was connected to a computer, which is what would measure her airflow. Her lungs were inflated with air through the mask and then the vest she was wearing would inflate very quickly (think of a big bear hug), forcing her to expel all of the air out of her lungs. And, VOILA, the computer was able to measure how fast air flowed in and out of her lungs.....The whole process turned out to be a lot less 'involved' than what I expected. The measures they use to gauge her lung function are:

  1. FVC (Forced Vital Capacity, which is the total amount of air that can forcibly be blown out after full inspiration)
  2. FEV 0.5 (Forced Expiratory Volume in a Half Second, which is the amount of air that can forcibly be blown out in the 1st half second)
  3. FEV 0.5/FVC (the ratio between FEV 0.5 and FVC, which is what shows the AMOUNT of the FVC that can be expelled in a half second)
  4. And lastly, the size/volume of her lungs.

Numbers 3 and 4 are the most important....Rylan's numbers (when compared to other kids her age WITHOUT cystic fibrosis) were 100% and 120%, respectively. HIP HIP HOORAY!! What a HUGE relief. I am so proud of that little girl, it's not even funny. Her BMI has shot up, as well. We are nearing the 40th percentile, with the goal still being 50th. I've already prepped her for an upcoming turkey induced coma. Tee hee. BRING IT ON!!!!


  1. That SO GOOD to hear! My first PFT was around the age of 6, I believe. I don't think they had anything like what you've described when I was just teeny-tiny. (Listen to me, talking like I'm an old spinster.)

    Oh, and that turkey induced coma sounds divine. Mmmmm...

  2. The pleasure was all ours. We had such a nice time with you ladies. Moganko was in looooooooooooooooove.

    I'm glad that the PFT went well. I never had a infant PFT that I recall. Of course, I could be wrong because it's hard to remember when I was an infant.

    Big Hug and Lots of Love from Joshland.

  3. I'll put my sailor's mouth away and just scream, BUCK YEAH!!!! THis is fabulous news, Teresa. I know you were worried about it but now, now you can enjoy the good news and breathe a little easier. And I know what your Thanksgiving blessing will be :-)