I need to vent. I don’t like talking on the phone because then I have to hear tone, those small sounds that seem to make it across the phone lines. A sigh or a slight tsk. The heaviness in words and breath, it all has texture when I can hear a voice on the other end. I feel myself trying to calm other people. Wanting to put their minds at rest, which in a way, I guess they hope they can do for me too. But I hear myself lying. Not strength doing the talking, not protecting the listener, but mostly–and this seems so out of place–hiding things to avoid some kind of judgment. When I worried he might be autistic or next, worried he might have some shade of mental retardation, I didn’t want to let anyone think it was a possibility because I didn’t want their pity. I didn’t want their, "isn’t it horrible what she’s going through." Even though these things are said behind my back, not to my face. And it does suck that I’m going through it, but hearing the concern makes me defensive. "Don’t feel sorry for him!," I want to snap. "He’ll be fine, you asshole!!!"
But I don’t know if he’ll be fine. And it makes my face twist into a knot, and liberates a wail I can’t suck back in. And I cry and shake into the hospital sheet. I want to protect him from your thoughts and so sorrys. From the possibilities of what this can be, and from anyone who ever underestimates him. And I guess it hurts most when I underestimate him. When I hear from the doctor that I should be very concerned. That the fluid had a white blood cell count of 150, and it should be in the single digits. That there’s high protein in there too. And these aren’t blood work results. It’s spinal fluid. Something is going on. It’s not benign. It’s serious.
Infectious disease doctors come in to speak with me, asking if I ate raw meat or gardened or was near a cat when I was pregnant. No, I respond to all these things. No infections. No fevers. No sickness through my pregnancy, and he’s got a healthy twin who was in that womb with him. They want to rule things out. "If it is meningitis, it’s not the kind that college kids get, where they’re fine and then tragically die the next day. And besides, Lucas is not acting like a kid with meningitis. He’s smiling and cooing and he has no fever." Still something is wrong. People crowd into our room wearing yellow surgical masks and gloves now.
The spinal fluid was then drawn from his shunt (the same type of fluid, but this time, not drawn from his spine but from his head), and that fluid is clear. In an hour, they say, they’ll have preliminary lab results on that fluid, letting us know what the cell count is on that fluid. And an hour goes by, and I start to pace and ask for it. Over and over. "Well it’s not in the computer." I don’t care. Pick up the phone and call the lab. The neurosurgeon said I’d have the results in an hour. "Well I just called the lab and they said the tests they wanted to run had to be sent out and we won’t have them for days." NO! That is not true! Except I don’t scream; it’s not my way. "Listen, I don’t care what they said, or who you need to call, but I should have results now. Period. Someone screwed up. I don’t care who it was. I just want an answer." The nurse takes off, returning with the news, "well, the test was put in, but for some reason the order was never put through, so now the lab will have the results in an hour from now." I could do without all this. I shouldn’t have to be, quite frankly, on top of these kinds of things. I should be comforting and feeding and watching my son. And maybe trying to sleep so I’m not completely useless tomorrow.
I will hopefully, within another half hour get the cell count from the clear fluid that was drawn from his head. Though I don’t know what that even tells me. Let’s say it’s perfect. So what? What’s next? We’re still waiting around for DAYS for all the infectious disease stuff to get back. TB, Toxoplasmosis, Meningitis, and who knows what else they’re testing for. Initials. CPV or something like that. They want to rule everything out. It could be the shunt, but why would the shunt fluid be clear?
So does this mean the yellow fluid they tapped from his spine is completely unrelated to his shunt? We don’t know. I don’t have answers. When I hear they might have to remove the shunt, just to rule things out, I begin to panic. Phil and I agree we don’t want to be alone anymore. We call our families and tell them to please come. We cannot do this alone. "I want bodies in seats," I say to him. "I need our family." And he agrees, completely. There is, holy shit, a first for everything.
And I’m thankful for this blog because the I’m so sorry’s don’t ever hurt when I read them. Is there anything I can do never hurts. It’s only when I hear it. It’s why I don’t answer my cell phone. It’s why I haven’t called any of my friends back. It’s not because I don’t need you… I just can’t bear to bring myself to say it all again, to hear the apologies, to tell me you’re there for me. I know. But this is what works for me. A computer screen and a world of people who can reach me through it.