I'm feeling so much more positive since my last entry. Today we met Dr. Duh at UCSF, he is their top dog for endocrine surgery, and was one of the first in the country doing BLA's laparascopically. He's done over 500 and really sounds like he knows his stuff.
I went in prepared to fight and was pleasantly surprised. The "fellow" came in first and had a really nice talk with us, he was really well informed and did a great presentation. I got totally antsy when he made comments to the effect that we would probably need to do "a little more" testing, get an adrenal CT and eek, meet with their endocrinologist. I held most of my thoughts 'till Dr. Duh came in as well. He is really great, very personable and very knowledgeable as well~ a really great bedside manner! He offered to have us speak to his endocrinologist, but it wasn't mandatory. Needless to say we told him we weren't interested. We will work with one of the UCSF pediatric endocrinologist while in the hospital, but that's all. He looked at the CT done at NIH and said another isn't needed and the only tests he wants done are a single cortisol, an ACTH level and one 24hr. UFC. He said they are just to have a baseline. He gets the "cyclic thing" and completely understands that the numbers are likely to be completely normal and he has no problem if they are. He event talked about diurnal variation, and how 8:00 AM's weren't necessarily significant in cyclics!
His scheduler is supposed to call us the end of next week. They did say it is going to be a while before he has an opening for surgery; June at best, August at worst. Alex says she would prefer to wait for him than to use someone else; I'm feeling the same way. It feels comfortable; she will be back in the same pediatric ICU where she was for the last surgery and they were really great. Once again... we wait!