Cystic Fibrosis update

Andrew had his checkup last week. The doctors have been concerned that his lung function tests have been dropping over time and thought that he might need to go to hospital to have an IV line put in and start infusion therapy at home. We all, doctors and us, don't understand how his PFT test can be this low with his activity level - he plays soccer every day at school, plays little league and plays school sports (flag football and lacrosse) - and never seems short of breath or coughs. Obviously hospitalization is not something we were thrilled about, so we stepped up his current therapies at home with the intent of him always doing them correctly. Sitting in a kitchen chair while doing nebulizer treatments, instead of relaxing on the couch. Using a noseplug as well to make sure he inhales the meds instead of breathing through the nose, and other things.

Well, it looks like those improvements paid off some. His PFT test came back with a small increase of 4%, so we've avoided his first hospitalization for now. He did however drop 2 pounds since the last visit, so we're looking at making some changes in how he takes his enzymes and moving to Prevacid instead of protonix for now. We think the drop has more to do with his activity level, he's just finished lacrosse season at school, than medical.

Last thing is that the doctor's think he's a good candidate for the hypertonic saline therapy I wrote about earlier. We have to get two different strengths of saline from the CF pharmacy and mix it at home since no one sells the proper strength yet. We'll see if it's covered by the insurance!

One more thing, next week is the Wine Auction and Dinner at Onotria, benefitting the CF Foundation. Andrew's uncle thought this one up and it looks like it's going to be a fun night. Check out the Andrew's Angels site for more info.