I know my son doesn't like to travel through the night. I know this about him. He can travel in his carseat all the live long day. But he's used to lying down to sleep at night, so he clearly hates to drive through the night because it's hard for him to fall asleep. Now we know, so we will only be taking road trips during the day.
I know my son hates the hyperbaric chamber. Don't get me wrong, we're still doing it because it's helped him immensely. But he absolutely, without a doubt, hates it. He cries as soon as we get in. He's resorted to crying the entire hour and change...loudly. And as soon as we get out, he stops crying. Doesn't take a genius to figure it out.
I know these things about my son.
What I don't know is what is going on in his brain. Specifically, what is making him jerk.
These jerks and possible seizure activity have been one of the biproducts of Christian's injury that I just can't figure out. It's a puzzle I have no idea how to solve it.
We've had EEG's but they've only been snippets of what is really going on. The jerks didn't show up on the EEG. Not even a blip. These jerks have evolved. They started out with just his eyes jerking up to the right very quickly. Then the jerks included his head. The jerks used to be extremely frequent - a reaction to any sound or movement that was sudden, like an exaggerated startle. Now he's not nearly as sensitive so the jerks aren't as frequent. But they've evolved into something harder. And they bother him. He cries when it happens, even if they only last about 3 seconds.
So the time has come for a 24 hour EEG. This will monitor Christian's brain activity for an entire 24 hours. The good news is he is hooked up to electrodes and then comes home with them attached to his head. So no hospital stay. We like that.
The not as good news is that it isn't a video EEG. It's not the end of the world, it just means a little extra work on my part to mark times and take my own video to correlate with possible EEG findings. But the EEG report won't be ready until next week. Boo. We don't like that. I hate to wait and I'm so impatient, especially when it comes to medical stuff.
As for what we'll do...well, the verdict is still out. The medication, Keppra, that Christian has been on since his PICU stay hasn't done a damn bit of difference, in my opinion. And all the while I've always wondered what Christian's jerks or seizure activity would look like without medication. I wonder this because while Christian was on Versed and Fentinyl, drugs that were supposed to calm him, he was agitated and not very calm at all. When Christian was on Baclofen to relax his tone, he was at his highest tone. My point is that Christian tends to react the opposite way for which the medication is intended. So why not see what happens if we choose not to medicate? If I don't at least try, I'll always wonder.
This would be awesome if it was successful. That would mean Christian was off ALL meds and only on vitamin supplements. And if we chose the opposite - to medicate, whether it was to increase the dosage of the current medication or add a new seizure med in addition to the current medication - we are basically heading toward the spiral of medication hell. I hate this idea. It is my least favorite option.
I'm really pulled to trying our hand at not medicating. But it's really scary. It feels like such a gamble. But, then again, so is introducing more medication, right?
I'm heavily considering not medicating now, but what about after receiving the results of the EEG? What if it's messy? What if it's horrible? What if he's having all of these seizures I can't recognize? What if he's having seizures that cause further damage?
That's my worst fear.
You know, when we were in the PICU, a nurse told me, "It's okay if he has seizures, because you can control those with medication." What a dummy. I know that sounds mean but I don't think she could have been more wrong, as I've discovered.
Usually I have some confidence about where we're going, but I'm admittedly totally lost when it comes to seizures or the possibility of them. They scare the crap out of me and I have no gut feeling about them. So I guess ask me if we'll choose not to medicate after I receive the results. I may feel differently about the whole situation. I'm preparing myself for the worse for self preservation purposes.
Ugh, I'm nervous. We need thoughts and prayers! I'm okay with it being status quo. I just don't want it to be worse.
So if you have a second, please say a mini-prayer for Christian - that the EEG process doesn't horribly agrivate him, and for me - that I can handle whatever results we get and make the right decision for Christian accordingly.
To be continued...