Long Conversation with the Pulmonologist

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!


Hope said...

I don't know how I missed this post. I don't know if you know this (it's mentioned on my blog), but I had stage 4 Neuroblastoma. I hade brain mets, which is how I was diagnosed. I'm praying that isn't what's going on with your little girl. I know a lot about NB and can answer questions if you have any.

It sounds like our girls have some similar symptoms. I hope you get some answers soon.

Carrie said...

We are dealing with the new diagnosis of possible hydrocephalus as well. For similar reasons, we are concerned about sedation with the MRI, but I have a feeling it is going to happen sooner than later.

I'm keeping your family in my thoughts!

Lindsey said...

I want you to know that you are always in my prayers. I pray that your family will have peace, that S will get better, and that her doctors will know exactly how to help her.

Love you :)