Have people gone through ER?

Hi everyone. I’m hoping someone here might have experience with this and can share any insight.

Our 15 year old son has a very complicated situation involving ongoing deep gluteal inflammation and sciatic nerve involvement. Earlier this year he had a serious pelvic infection that required a long hospital stay and two surgeries. After months of recovery he improved, but the pain returned shortly after he eased back into sports end of Aug/Early Sept. Recent imaging at a children’s hospital in Florida shows progressive/active inflammation and edema throughout the deep gluteal region and along the sciatic nerve which is compressing the nerve. Infectious disease & rheumatology have ruled out their areas of concern and believe there is some kind of mechanical or structural problem happening, but no one can figure out where it is coming from. Neurology, and pain specialists are doing what they can but since the issue is active, they can't do much since the underlying cause hasn't been determined. His pain is severe and continues to worsen.

His surgeons and pediatrician have strongly recommended Mayo because they feel his case needs a center that has seen thousands of rare presentations. His full referral and records were submitted to Mayo two Fridays ago and his case is currently in triage. We were told to call back this week if we do not hear anything.

The problem is that our son is deteriorating while we wait. His numbness has spread down his leg and he is waking up every couple of hours in extreme pain. He can't go to school and has asked us to please take him back to the hospital. Our local hospitals have tried everything they can think of and do not have more answers. We are reaching a point where we feel unsafe waiting.

My question is whether anyone has ever flown to Mayo and gone directly to the ER in order to access care when a case was already in triage. I understand there are no guarantees with this route, but we feel desperate and are trying to determine whether this is a reasonable path or if it would likely lead to more waiting without much benefit. If anyone has experience with this or knows how the ER side interacts with specialty care for complex cases, I would be grateful to hear your story.

Thank you so much for any guidance.