A Change In Attitude

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!

I Should Have Seen It Coming

Well, I got the rug pulled from under my feet again. It felt more like getting hit up side the head with a shovel. How is it that I remain optimistic going in to these appointments? Will I never learn?

Yesterday morning Alex was feeling particularly awful. She was in a low to rival all lows. Before we could even leave the house she took 3 doses of hydro to get past the extreme nausea. A three hour drive got us to Stanford just in time for her 2:00 appointment. The receptionist told us Dr. V was running 45 minutes to an hour behind. The finally called us into the exam room at 3:40. Another hour later we were still waiting. I stuck my head into the hall and complained. They sent in a doc in training. He was completely lost and baffled; he had none of the information needed. Out he goes. A little after 5:00 (yes this was a 2:00 appointment) the doc in training along with the surgeon arrived. By then Alex and I are completely frazzled and exhausted.

Dr. V gave us a heartfelt apology for the wait and gave us his full attention. The good news? I really do like the guy and feel he is qualified to do the surgery. The bad news? He feels "considering the complexity of the case" he needs to talk things over with Dr. Friedman and some of his Stanford associates before he is willing to schedule surgery. I can't blame the guy I guess, he doesn't know Dr. F, so his caution is warranted. I know I should respect that he is not someone to jump in to life altering surgery uninformed. I just wanted so badly for this to go more smoothly.

I swear the long wait threw me off my game. I should have explained my decision making process; I thought of that in the car on the way home. This morning I sent Dr. F an e-mail to tell him to expect to hear from Dr.V, but who knows how long it might take for the two of them to connect by phone. I sent Dr. V an e-mail as well. I gave him a complete explanation of all the things I failed to mention yesterday. I just don't know what to think now. I don't know when we will hear back or if he will be willing to do the surgery once he talks to everyone.