Monday, October 25, 2010

Short and Sweet.....

Happy Monday everyone! Just wanted to post a quick update.....we got a call from the University of Minnesota clinic last week and they have scheduled Rylan for an infant PFT on November 15th. PFT's (pulmonary function test) basically show how well a person's lungs are working. The problem is most kids can't properly 'do' them until they are 5 or 6 years old. Click here to see a great video from a fellow CF'er that helps to explain need to have excellent control over your breathing in order to get an accurate reading. So, unfortunately, that means you can't get a baseline for their lung function until they are older. Some clinics (like the U of Minn) do what they call an infant PFT, where they actually sedate the child and do some sort of process to test their lungs. Unfortunately, I don't know much more about it other than they give them drugs to make them really drowsy, put them in a box, and somehow 'capture their tidal breathing parameters'. Yeah, you lost me there too. Ugh. Sounds wonderful, right? You can count on me being a total wreck that morning. But, I am happy we are doing it. Apparently they are only able to do these infant PFT's until they reach a certain height and weight, so that's one good thing about Rylan being on the little side. Lately, we just have to try to find the positives in anything and everything we can! With the way she has been growing lately, I'm sure (and actually hopeful) this is the last one of these we will be able to do.....

Also, tomorrow marks Day 1 of our next round of TOBI. She will be on it for 28 days again and then we will reculture for the pseudomonas. Fingers crossed that this will be her second negative! If that is the case, then we will do one more round of 28 days on, 28 days off for negative culture number 3.....and then (everyone say it with me!) RYLAN WILL NEVER HAVE PSEUDOMONAS AGAIN!!!! Hey, we can always hope right?


  1. Teresa, I wanted to thank you for your comment on my blog. =) You are very kind.
    Your family is absolutely adorable and I look forward to getting to know you better.