I remember it happening when my father had his unexpected heart attack last winter and wound up in the ICU for nearly a week. A day like any other, a day like today, in which my biggest concerns went quickly from “Man, I hope Alex goes to fucking sleep tonight” to “Man, I hope my dad makes it through the night.” The shift in thinking here is vast and it’s frighteningly quick.
Suddenly, even news that on a normal day would be some of the worst news you could hear “he had two clots, one of which is threatening to kill him, but we’ve removed one of them” sounds rather…good. It could always be worse, you tell yourself as you pace up and down those hospital corridors peeping into rooms whose occupants, well, HAD it worse than you do. But somewhere in those dark recesses of your brain, you remind yourself that even though for now, for RIGHT now, things are going as well as you can expect, they can sour without warning.
Yesterday, The Daver and I took our week old daughter to a pediatric neurosurgeon after we picked up her MRI films from the hospital. We sat there in the waiting room, me with a baby on the boob while he filled out the piles of paperwork and received the kind of pitying looks from the other patients as they walked by that made my heart swim with tears.
Yes, it reminded me, it is this bad.
After the neurosurgeon, ranked one of the best in the area, bounded into the room, filling it up with a sort of ebullient energy that only someone who abso-fucking-lutely loves his job has, he flicked through the massive stack of films to find one to show us what was wrong with our daughter. In cross-sectional picture form.
And for some reason, despite my incredible love of anatomy, my utter lack of horror for things like internal organs and dissections (I am, apparently, my father’s daughter), I could hardly handle looking at these films that showed my daughter’s head. In ways I never wanted to imagine it.
It’s funny–I know HOW these things work, I could probably give you a dissertation on reading an MRI of the brain without much prep–and yet seeing these parts of brain, parts of my DAUGHTER’S brain, made me cry and feel revolted. It felt unnatural to be looking at these films. In several, I could see that she was crying, or at least her mouth was open and neck arched backward and I ached. I physically ached for her.
Sure enough, right where some brilliant tech had put some of the measurements on the films, the brilliant and kind doctor pointed out what we can easily see from the outside: her cyst. In medical terms, as I alluded to by the title of my last post, it’s called a cephalocele, and it’s sort of like a hernia on the skull where the bones of the skull didn’t properly fuse together while in utero.
I’d known all about cephalocele’s before I’d birthed Amelia, before I married Daver, and I knew enough to know that the one that my daughter has been born with is really pretty minor. Typically, they cause all other sorts of neuro symptoms and retardation, but by the grace of God, Amelia seems to have none of those. We will, of course, know more as she ages and appropriately (or not) hits all of her milestones.
The upside to her cephaolcele is that it’s not an ENcephalocele, which means that the cyst is full of cerebrospinal fluid WITHOUT brain matter. The bad side is, of course, that she’s still going to need brain surgery in the following weeks. And no matter what way you try and spin this, it’s fucking scary.
The bounding doctor would like her to have this surgery in the next couple of weeks so she won’t remember it when she gets older, and while it makes sense to me, I’d still like to cocoon myself away from the thought of my daughter going under the knife for the next, oh, I don’t know, 60+ years? By which time I’ll be dead and I won’t have to sit in the PICU for several days while she wakes up, my breasts aching and full.
Unfortunately, the doctor whom I adored on sight, does not take my insurance and although I have a PPO, I’m not sure we can swing the thousands of extra dollars it’ll require to have him specifically do the surgery. Besides, he argued, this is a minor surgery. It’s not like it’s REAL brain surgery (his words). So, he referred us to a colleague of his whom we will see on Wednesday of next week and form a Plan Of Attack.
I only wish this Plan Of Attack included leaving my sweet baby girl’s head unscathed and eating a bunch of Funyons while sitting on my bum, but I’m pretty sure I’m not going to get out of this one.
And so I sit here, waiting again while freaking out quietly, and trying to remind myself that things could always be worse. Always.
It doesn’t help much, but it’s all I have to cling to right now. Well, that and my brand new bottle of Valium.