Ooh Ooh! A Bonus Post!

So because that post was just so utterly pathetic I thought you all might enjoy a brief synopsis of the conversation I just had with a nurse.

You see, Dovi is seen every year in New York by the lovely folks at the Dysautonomia Treatment and Evaluation Center. They coordinate his care. You know, something about "world wide expert on FD" just kinda gets people like me all twitchy and excited.

His appointment this year is in February.

Remember how Dovi has Medicaid through that lovely waiver program that I had the insane fight with the insane doctor at the insane hearing? Well, it seems that they offer some level of transportation funding to travel to and from doctor appointments. The idea of it is more like a medicar picking us up and driving us to Children's here in Lincoln Park, but we were told to apply for them to pay for our tickets to New York. And if he doesn't get that, we might get funding from another program we get services from DSCC, but first we need to get denied by Medicaid for transport, then maybe DSCC will pay.

Frankly, I don't care who pays, as long as it's not me.

So I've been chatting on and off for a week or so with this lovely nurse, Judy, at the transport company. She has to collect all this random information, why Dr. Axelrod is the best doctor, etc etc etc. So I've told her repeatedly that, y'know, there are only like 350 living people with FD now (correct me if I'm wrong, my loyal FD readers, as in Michelle). Dovi is number 512 of the total people diagnosed at the Center since its inception some 40 years ago. And, y'know, Dr. Axelrod. has. treated. every. single. one. of. them. So, she's kinda the expert? More like, she, and her associates, are really the only show in town, or in North America (and don't get me going with the politics. She's the only MD out there) available to guide us in the treatment of our son's rare, fatal genetic disease?

So we're going. Now please pay.

Back to my conversation.

So she says to me: "Have you ever gone to see Dr. XXX at Children's?" Now in Dr. XXX's defense, I'm sure he's a lovely doctor. A lovely GENETICIST. Yes, Geneticists see kids with FD. They are the ones who diagnose them and then send them on their merry way to Dr. Axelrod (noticing a pattern here?) Geneticists don't manage the day to day care of a kids with a genetic disease.

"Hi, Dr. XXX. Dovi's retching, y'know, it's really bad now. He's in crisis really bad. His BP's nuts and the valium isn't working. How much can I give him before we need to go in?"

Do you think he'd know what to do about that?

Neither do I.

So when lovely Judy asked me that question, "Do I know Dr. XXX, he has seen kids with FD before?"

My response?

"No. I have not. And I will not"

But I said it nicely. Sort of.

Now pay, sillies.