The Boston Children's Appointment that was not

Del's neurofribromotosis (NF) minimally effects her life. She has a bump here. A bump there. We recently started going regularly (every 6mos) to our local optometrist to closely monitor her eyes as growths on the optic nerve are common and most likely to effect her ability to function in life (ie she could go blind).
Since the NF diagnosis, Del's regular pediatrician has been saying that at some point, we should have her seen by an NF specialty team - the closest options being Boston or NYC.
Del is now 8, and it seems prudent to have her seen before she gets into full swing puberty as this is one of the times in life when neurofibromas tend to grow (the theory is, this is a result of increased growth hormone in your system).
I quickly said Boston as my preference because we have family and friends in the Boston area who we could stay with and it's a closer drive than NYC.

Del's appointment was scheduled for July 7th.

Coincidentally, Del's routine eye appointment on June 8th showed some swelling in her right eye, which lead to an MRI, which lead to confirmation that yes, she has a fibroma behind that eye. So phew! We already have this appointment in Boston. We'll figure out what the best course of action is then.

I received a letter from Boston Children's recommending I get the referral confirmation number so that I have no trouble with insurance paying. After some run around, my impression was that the appointment at Boston was covered, but there was no confirmation number - but don't worry.

After driving into Boston (about 4 hours to my brother's house where we spent the night, and then another hour into Boston) - did you read that? I'll say it again - after driving from rural NY ... as in, right near the Canadian border inside the Adirondack Park to Boston, I decided to call and confirm that everything was per-approved from the parking garage of Boston Children's. We'd arrived about 45 minutes early, so why not?

The poor call center person. I get it. Awful job to work for an insurance company answering these calls.
She read the long winded denial.
Request is denied because the patient can see a pediatric neurologist in state (in network), Boston is not necessary. There are pediatric neurologists in state.
I explained that it's not just an ophthalmologist, neurologist, and geneticist she needs to be seen by - it's necessary that these specialists also have expertise specifically in neurofibromatosis. And we're human beings. While it may work better in their system for us to stay in state - it doesn't make practical sense. Is the insurance company going to pay for a stay in NYC? The gas money to get there? Create some sort of support network when Del likely needs surgery which will require a stay near the hospital?

I called our pediatricians office and they got on the phone with the insurance - including Del's actual nurse practitioner - explaining that we are at the hospital in Boston.
The insurance company faxed over a copy of pediatric neurologist in NY - Syracuse or NYC - (4+ hours for Syracuse - never mind NYC), to be helpful.
The insurance company didn't seem to understand that more than a neuro specialist is needed - what about the geneticist, the ophthalmologist? They also apparently don't realize that they do cover these specialists in Burlington (an hour and a half away) - across a state line - and we've used those specialists before. What they failed to also see was that these specialists are not neurofibromotosis specific.

Nope.
Denied.

So we drove home.
What makes this hard, is realizing I was holding my breath until this appointment.
Del still has a fibroma behind her eye. We still need to figure out what the course of action is.