Monday night I had an extensive conversation with the nurse practitioner at our pulmonologist's office. She is amazing and caring and spearheaded the effort in screening S for CF, immune disorders, allergies...etc.
She thinks (and she is a pulmonologist mind you...) that S's problem is due to hydrocephalus or is cyst/tumor related. She is adamant that S needs an MRI and when I explained the extensive rationale that the anesthesiologist gave, she agreed it was risky - but necessary. I explained that we were consulting with her neurosurgeon next week to see if he thinks that a) the MRI is necessary and b) it needs to be done now. We discussed the possibility of a pheochromocytoma and she seemed to also agree that it was a viable possibility. One thing that has been brought up as a possibility (although after I read the research, I didn't sleep for 2 days...so I'm not providing a link...) is neuroblastoma. CANCER. Too scary of a thought to go in to detail. But it is NOT GOOD. At all.
While we wait for more answers, S has been having some wheezing issues that are difficult to treat because most nebulized medications for asthma increase heart rate and blood pressure. We have used these treatments sparingly, but worry what will happen when she MUST have them.
So we continue to wait and look forward to answers!