Oh man. I can completely understand why you are so frustrated. <img src="i/expressions/face-icon-small-mad.gif" border="0"> This is unacceptable.
The specialist does not have to be the one to order the Ambry test. Since the pediatrician does not believe that the panel test had to be abnormal for Daegan to have cf, I would try to get the pediatrician to order the Ambry test, since any dr can order it and any lab can do it (it's a kit with one vial and packaging to send it out to Ambry's lab in CA.)
Doctors can be at hospitals known to be the best, but what it comes down to is whether or not they are taking care of *your* child. It doesn't matter whether or not the hospital is rated #1 if your child is sick and not getting the care he needs to thrive. If the hospital has a good pulmonary center, can you see another dr there? If not, I would still consider switching, or at least having a consultation elsewhere.
Borderline pancreatic function concerns me, especially combined with reflux. His constant eating combined with failure to thrive with that test result is a big, huge, waving red flag for pancreatic insufficiency, in my opinion. I am not a medical expert by any means, just a concerned parent... but the results he HAS had to date, combined with his other symptoms, are very concerning. I wonder how he'd do with a trial of enzymes.
I would ask, the next time you are in the pediatrician's office, for him to show you from Daegan's chart the actual paperwork he received regarding the sweat test results and genetic testing results, because the ones you got were incomplete. This might work better in person, when the chart is right there, then over the phone or through mail. If they refuse, tell them this information concerns your son and that you know you have the right to see it.
If this still doesn't work, I would call the lab that did the sweat test as well as the lab that did the cf panel, and tell them you have been unsuccessful in getting a copy of the lab report of the actual numeric results of the sweat test and actual reports for genetic test, and see what you need to do to get a copy from the hospital. You will have to sign a privacy release for the hospital, but should be able to get it from the medical records dept (it might take a week or two.) While you are at it, ask for any of the records re. your son's testing and care you are curious about. It's good to have.