Monday, August 31, 2009
So...Let The Positive Energy Flow, Brutha!
I promised some people in e-mail, in follow-up comments and even via phone that I am going to approach today differently. And thus begins the keeping of that promise.
It's around 8:17 AM as I clack this. Jen got a GREAT night's sleep in the hospital last night, can you believe that? She feels rested. I got a solid near 7 hours last night. Very much needed. Bennett slept most of the night.
I arrived in the room to find both asleep, and Bennett looks good, his swelling is still there but going down some. Time will tell today whether he will be more or less out of it than he was yesterday, but I am guessing that he will be less out of it. Call it hope, call it a hunch.
We need to discuss medications today with the Epi's when they do rounds and also how his EEG looks. BTW...if you want to not go crazy watching EEG's in the room while your recovering child is hooked up? Turn off the monitor. I didn't know you could do that, but you can. I did last night, made a huge difference for everybody, and I am not turning it back on to even peek.
Not that I don't care, because I do. Very much. I'm his father. But I can't do anything about it so I am not going to dwell on that and I am going to just go with my gut and the advice of friends which is this: his EEG is gonna look like shit for a long time, don't sweat that. I won't.
Let's talk seizures. The last seizure cluster I witnessed myself, in person, was a monster 20-minute set on Thursday morning, just before he went into the operating room. Then on Thursday night, he had a 20-minute set of clusters Jen was there for. Friday night, he had a 4 minute set.
Since then? Zero. He's had some staring episodes and the chaotic EEG, but the seizures themselves, the herky-jerky, epileptic movements, have not been seen since Friday night.
I will not be running about declaring 'SEIZURE FREEDOM' in the streets. I am going to be positive, but I am also realistic. I'm not even sure the term can apply...even to life itself. We can ALL have seizures, for many different reasons. What I will say is that it is DAMN nice to have a couple of days go by with no seizure clusters. That, my friends, is a very, very good feeling. Dampened, sadly, over the weekend by yours truly, who was having some emotional control problems.
Like I said, we are on an ongoing journey, and this is but one part of the greater whole, but it is worth letting a giant toothy grin take hold for a minute or two.
As I was writing this, Bennett sat up in his crib. From that point, around 8:20-ish, until now, he has smiled, babbled, sat up, stood up on his own, and then we even walked him down the hall after putting shoes on his feet. He was a bit wobbly, but he did OK. No zone-outs WHATSOEVER. At least for an hour or so here, he has been the Bennett that I remember.
Clearly HE wants he leads off, we'll see what the Epi team says when they round. I still have not turned on the EEG screen nor do I intend to. I'm done with that for a while. I refuse to be speculative today or pick apart every little detail. We'll discuss all that at rounds. Good news aside from that right at the time of the writing of this is that he is off IV fluids. The boy is eating and drinking.
As many people have reminded me throughout not just this past week but since February, this is a very long, very difficult road, and we are far, far, away from the end. But for me, today, the scenery looks a whole lot better.