In advance, let me just apologize to any of those people who are going to be reading this who would KILL to be in our position right now. We had a brain surgery last week, something a lot of kids are not eligible for to treat their IS, and since Sunday, and with that only a single spasm, there have been no seizures.
The preface is, I get that we are one of the lucky ones, and I also get that this is a long journey, with many twists and turns along the way. What frustrates me is that right now, I am not celebrating his condition of having no seizures. Instead, I am drowning in fear over what I have been witnessing but not really talking about very specifically over the last couple of days.
We've had the issues you'd expect, the constipation, the pain managment, the vomiting, the periods of lethargy, the having to be RIGHT there at all times to watch he does not fall or hurt himself.
What I was not prepared for was the radical change in his personality. This is not the boy I played with the night before the surgery. There is something very 'off' about him, and the thing is I am not really sure if I am supposed to be as worried as I am about it. I think I've said before. No manuals.
He screams a lot, but not a scream of pain, more of aggression. He bites and chews at everything, slaps at everything. I have rarely seen him laugh or smile. He might let you hold him a second, then he's writhing around, thrashing to get away.
I should probably not write about this, but it's what I do. I'm just fuckin' scared today that I did something wrong, that this is not going to change. I know logically it's probably just some manifestation of the brain healing, but the emotional part takes over in me and I get very, very concerned.
And bottom line is I should have been more prepared for this week. I should have gone through that service and looked into hiring someone for the week to help us. I just didn't realize it was gonna be like this. I thought he'd be woozy, groggy, sleepy and in some pain that we'd give him pain meds for. Even thought yeah...I can handle the vomiting if there is some and the poopy problems.
You know how I record everything, how I shoot photos of everything? His behavior is so feral right now I haven't touched my camera, its that freaky.
Like I just told a good friend of mine. I should be grateful, I should be thankful, he hasn't had a seizure in days...but right now, at least today, it just feels like a different flavor of the same Kool Aid. Sure, no seizures, but I have a son in great distress and I am powerless to help him. I hate that feeling more than any other I have experienced in life. EVER.
Let's hope tomorrow is a better day.