Having worked as a CF Nurse Coordinator, I can appreciate your frustrations with caring for a child with CF. I highly recommend that you get a copy of the book "Cystic Fibrosis Medical Care' and another book about CF (can't remember title), written for parents and patients, by Dr. David Orenstein. You can get the books from Amazon.com. Dr. Orenstein is well-renowned in the field of CF. His books are easy to read and understand. I think you will find a lot of answers to your questions. This way you will be educated and be able to be more proactive in your child's care. Good Luck.
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