Thank you all for the well wishes.
Day one is in the books. Today was a pretty easy day with just interviews with the doctor, pharmacist, geneticist, and dietitian. Tomorrow shouldn't be too bad. I've got an early appointment with the neurologist and then a neuro psychologist. (whatever that is)
I did get some information today though that has me a bit upset. Some things I didn't realize and I'm still trying to process it and NOT let it bother me. Wednesday is going to be the biggie. I've got some procedures coming up that I wasn't looking forward to already, but it turns out that they're going to be putting me under with a general anesthetic. That will make the time go quickly, but I hate going under. Every time I've been put under, I've had a hard time coming out of it. I end up having to spend 10-15 minutes having to actually THINK about breathing! It's a scary thing when my pulse-ox starts beeping and someone has to keep on telling me to take deep breaths and concentrate on breathing. It's happened four times already and it's scary.
There is another issue that I had no idea about but was told today. One of the tests they will be doing while I'm out is to check the pressure in my cranial cavity. The doctor said it isn't likely, but there's a chance that I may have to see a neurosurgeon for surgery up there if the result isn't good. As if I don't have enough on my plate, neurosurgery is the LAST thing I want to think about right now!
Something else they dropped on me today. I was told that I'm probably going to have to make some pretty difficult lifestyle changes. It looks like I'm going to have to go on a Ketogenic diet. (almost NO carbs) This is due to some medications they want to put me on. Carbs in the body react badly and cause bad side effects and the drugs won't work. One of the drugs is going to cost in the neighborhood of $25K a month!!! I don't think BCBS is going to pop for that but they're checking.
So anyway, today wasn't too bad and tomorrow should be OK. But I'm not looking forward to Wednesday.
Thank you again and I'll keep you all updated.