The one thing no one ever tells you about chronic illness, is the immense amount of time you’ll wind up spending at a number of different doctors. I’ve talked about how much time I feel we’ve wasted sitting in waiting rooms and in appointments where we find nothing out but now things have changed. We have a diagnosis and it’s time for us to pick our battles. To choose what we feel is important in Rosie’s care so she has the best quality of life and sometimes that means deferring what a doctor wants us to do.
The most important thing for our daughter right now is for her to have as normal of a high school experience as she can. Now that she’s back in school for a half-day and trying to go back to dance, both of those things have to come first. And, both of them are exhausting when you haven’t really been out of bed in a while. So, while our neurologist wants her to have another MRI and start physical therapy, I’ve stalled on both. Physical therapy, while I do believe it could help her headaches, is just another thing on her plate that will take away from the things she wants to do and it’s another thing in her day to make her tired. She has to have a balance.
Also a balancing act? Trying to juggle what each specialist wants us to try to what we feel are priorities. The GI doc referred us to the Abdominal Pain Clinic to deal with the residual symptoms from the SMA syndrome and at the same time suggested medical acupuncture. We can’t get in for acupuncture until April and would like to try that first before we submit Rosie to a whole new group of doctors and medications. So, I blew off setting the other appointment. Quite frankly we’ve had enough doctors.
Yesterday, we saw an ENT as a follow-up for a sleep study from December. We’ve always known that our teen doesn’t sleep well but didn’t know why. The study proved that her oxygen levels dip when she sleeps and that she frequently wakes. Ehlers-Danlos patients can have “floppy” airways that collapse when they sleep so they sent us to an ENT that specializes in this area. The good news is her tonsils and adenoids are not blocking her airway. The bad news? He can’t tell exactly what’s going on with her airway unless he sedates her and scopes her. Additionally, her septum is 95% deviated and that can be contributing to her struggle to sleep and possibly her headaches. He presented us with three options. Going a conservative route to see if a mouthpiece may help. Doing the sedated scope to see what’s going on. Or, the scope and septoplasty so she could breathe better. Rosie chose the third option.
This is the first medical decision that our teen has made on her own and I’m proud of her. While she’s a minor and ultimately the decision is mine, it was refreshing to see her listen carefully to the doctor and make her own choice based on the facts. While I’m not thrilled that she’s going to have surgery and neither is she, if there is a chance that fixing her septum could help her sleep better and potentially alleviate her daily headache, that would be great. This is one option worth a try.