Cenow,I am going to post a couple of links you may find helpful in dealing with the many medical complications with your child. I am so sorry to know you are still floundering looking for the correct dx.
http://www.childrensmn.org/services/cystic-fibrosis?gclid=CMO2uY-fjbsCFes-MgodZ1QAXw
http://www.nationwidechildrens.org/find-a-doctor-service-condition
I was hoping someone familiar with the same problems you are experiencing would be along to guide you.
Kindly,
Kitt