Carrie,
I do feel your pain and frustration and hope you will soon find a solution.
 I sent you a post a while back about having nasal stents placed.  I don't
know if that was even a workable option.  What about a return to the ENT
surgeon or a second opinion with another one?  It just seems this cannot be
right for the baby not to be able to breathe and nurse.  Maybe local
anti-inflammatory nasal drops, maybe something like neosynephrine drops
before a fdg try.  Of course, approve with physician first.  Would a consult
with an OT who specializes in infant fdg be available to you?  Good luck to
you and your baby.
Laurie wheeler