Latest update on Ashleigh
Ashleigh has only been in one time for a tune up in her life, 6 years ago. She has remained very healthy with very good PFT's. She did not receive antibiotics other than Tobi the last 2 years until this past Oct. when she grew Pseudomonas and was placed on Cipro. She got better and then began coughing about 3-4 weeks ago but had no other symptoms. It was a cough I hadn't heard before, sounded almost like asthma. So we called the doc and they decided that due to her cough and her history over the last few months that they wanted to do a CT Scan of her lungs and a bronchoscopy, as well as full PFT's. The PFT's were down a tad and the CT Scan showed some scarring (we were pretty surprised) and some infection. They suggested she go in for the bronch and have a PICC line put in for a tune-up. We agreed. The Bronch shocked us...her lungs were totally filled with yellow mucus. We had absolutely no idea we would see that. She is so healthy and full of energy and nothing stops her. They said that it is super sticky and that she can't move it out so we are adding exercise 5 times a week for 30 mins and Pulmozyme to break it up. Now you have to know that all CF kids are different and all CF Centers are different. It depends on his past history and also how aggressive the CF team is. Ours wanted to preserve Ashleigh's lung function and felt we needed to be aggressive. I'm very glad we did what we did, no matter how hard it was because she was in trouble. Although her culture from the bronch did not grow anything, we are sure the antibiotics will help as well as the added CPT and Pulmozyme. We have been using hypertonic saline for about 3 years and they decided to stop it feeling that it wasn't helping her. If you are using GSH, please don't step back and think that all is well. We had a huge wake up call. I'm not blaming GSH, I am blaming myself. I thought because she was inhaling it twice a day, every day and taking it orally that things in her lungs were good. I know it's not a cure all, but just please take your kid's CF very seriously and be aggressive. I think we were a bit in denial, but then again there is no way that we would have known what was going on if we hadn't had those very important tests. A suggest a CT scan of the lungs for anyone who has not had one done yet. IT's a great way to have something to compare to and chest xray's are just NOT good enough. Her last chest xray showed NORMAL lungs...not at all the case. We are working to get the mucus out, but it's going to be tough.
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