A Kick In The Teeth

Well, I suppose that's what you get when you put your mouth down at boot level. And, once again, that's what I got today. Damn doctors with those nasty boots. Stupid me for putting my mouth down there. I really was ready to go home with a "take her home and love her," but I didn't even get that. Kick!

Even before coming here to Detroit I pretty much knew what the guru Dr. Chugani was going to say, but for some reason, I didn't think it would hurt so badly. Multitudes of people on my on-line support group praised Dr. Chugani for not only his medical brilliance, but also his wonderful & warm bedside manner. But despite Jordan's cute chubby cheeks & big blue eyes, he transformed into a cold-hearted bastard right in front of me. Maybe he had a bad week & was tired out by Friday afternoon. Perhaps it's his defense mechanism to be cold when he has a kid he can't help. But whatever the problem, I really just wasn't ready for even him to be so cold-hearted. I'm a scientist, too, but I just can't understand why doctors (especially those who are parents themselves) can be so inconsiderate about Jordan. Whatever her condition, it's so rare that she instantly transforms from a living breathing baby girl into a somewhat interesting science project.

I already wrote a scathing e-mail about his incredible insensitivity to him and his nurse. Perhaps that will help me sleep tonight, at least a little better than I would have otherwise. I'm just so tired of "taking it" from doctors.

There were a couple of things we learned: Jordan is still having lots of seizures (not infantile spasms), she has incredibly little brain function (except in motor and vision areas, even though she probably can't see), and her brain looks like that of a newborn's (which makes sense because she acts like a newborn). He thinks that the patterns from the PET are consistant with a metabolic disease (back to that), perhaps one so rare it has not yet been described. He collected blood from her so that we'll always have her DNA and perhaps someday we'll be able to diagnose her, whether or not she is still around. A diagnosis, obviously, is not for her at this point, but for us, and for Avery.

As an afterthought, because I asked, he prescribed a new anti-seizure drug to start her on (Topomax). I took this as a direct hit: it's not even worth the effort to try to control her seizures. Maybe he just forgot as he was running out the door trying to pass us off to his assistant, but I wouldn't be surprised if he just figured "why bother." Kick!

We will keep our appointments with OHSU, UCLA, and perhaps even others (I'm really not a giver-upper), but now that we're back to focussing on the diagnosis of Jordan, things are feeling pretty grim again. At least when we're dealing with her symptoms we have a target and a goal, and things we can do to try to make things better for her. I have to admit, though, it is pretty dis-heartening to think that no matter what I do to make things better, nothing is really working. Breastmilk, physical therapy, PET scans, medicines, it really is out of my (our) hands. I guess that's life. Sometimes you just get kicked, really hard.