Thursday, February 10, 2011

Ping Pong Anyone?

Never in the almost three years of dealing with daily seizures have I ever been so indecisive about our situation. Sure, it's been up and down since this all started, but it's never changed so rapidly over such a short period of time -multiple times at that.

Before his surgery, his changes were almost always gradual. He's never had consistently high or low amounts of seizures, but the inconsistencies have never been to this extreme. There is only one time that I can recall where seizures were so scarce that I could actually imagine them stopping altogether. One time in nearly three years. And he wasn't seizure free for even a day. Instead of having five or six clusters of 15-90 seizures, he would have random, single seizures scattered throughout the day totaling maybe 15-25. I think that lasted a couple weeks. It was immediately following the ACTH wean while he was on the lowest AED dose he's ever been on (50mg of zonisamide). Then, just like someone flipped a switch it was over. Clusters started back up and he was having (on average) 50 a day. I never realized at the time that I would eventually wish he was only having 50 seizures a day. That was a long time ago. Ages it seems now.

From that point on until now, we've seen them gradually evolve. Over the past two and half years, we've seen new ones appear and disappear and reappear. We've seen intensity and frequency increase and decrease. We've seen development progress and regress and progress again. We've seen his personality peek and decline. It's been a never ending cycle of changes. And the only thing that was ever consistent is that nothing was ever consistent. It's what we began to realize as our normal. We adapted.

As humans, one of our most basic survival mechanisms is our ability to adapt. Adapt I have -without even realizing it most of the time. Little by little. I slowly changed and adjusted my expectations from praying it would stop so we could resume our lives to praying it would stop so we could save our son's life. Three years worth of daily seizures, I know now that there's no turning back. I also know that our life is no longer on pause until we can stop the seizures. This is our life. The damage has been done and it's unlikely we will ever be able to repair the damage that has been caused by the thousands and thousands of seizures he's had in his life. It's been a very very slow realization, but it happened.

I adapted.

The difference, though, between what has transpired over the last few years and now, is the fact that nothing happened overnight. Other than that infamous day of diagnosis, we've had the luxury of gradually adjusting to and accepting the changes that have taken place. Not now. We've seen more change in three weeks than we saw in three years. And it changes EVERY SINGLE DAY. Just when I think it's better, it gets worse. And when I think it won't get better, it does.

I can't even describe his progress. I've never been so completely confused. Picture different types of seizures, intensity, frequency, clusters, no clusters, alertness, little alertness, interaction, little interaction, laughter, and screaming. Then jumble all those up into every combination imaginable. And change it everyday. That's what we're seeing.

I've said it many times before, I expected to see seizures after surgery. I expected mood swings and irritability. Our doctors even prepared me that I may see different types of seizures immediately following surgery. But these extreme changes occurring every single day, four weeks after surgery, I did not expect.

Yep, today is exactly four weeks since surgery. Four weeks ago today, I was sitting in the waiting room at TCH anxiously waiting for those phone calls from the OR. For six excruciating hours, I waited. I can still vividly remember almost everything about that day. Surrounded by friends and family, we were praying for our miracle. With every minute that ticked by, we got closer. I can still almost feel that hope coursing through my body like it did that day. Finally, I thought all day. Finally, Austin was getting his chance to overcome this. A real fighting chance.

And here we are. Still no closer to knowing anything than we were four weeks ago. Still praying for improvement. We do see it. Then, we don't. Then we do. I have to admit, there is still overall improvement, but it's not enough. Had I known where we'd be four weeks out before the surgery, it certainly wouldn't have been enough then either.

How in the world do I adapt to something that changes every single day? It's difficult not to get my hopes up when I see him go hours and hours without a seizure, something we never ever saw before surgery. On the flip side, it's difficult to keep my hopes up when the days seem no different than before surgery. We've never been at such a crossroads before, and it's never shifted so much from day to day.

I've never been so eager to go see our less than personable epi. We go tomorrow for our one month follow up. Maybe we'll get some insight into what's going on and where to go from here.

We don't have an EEG scheduled (why I don't know), but I'm in the process of collecting some of Austin's seizures and behaviors on video to take with me tomorrow. He's going to see what's going on one way or another!

By the way, I do appreciate all the advice, support and encouragement I've received over the past month. Whether cards, balloons, sending food, prayer chains, comments here, texts, phone calls and emails...I feel very blessed for our support system. I haven't been great at keeping up with many of you, but I am still very grateful and nothing has gone unnoticed.


Jonathan said...

You grown into it, honey.


JSmith5780 said...

Hoping you get some much need help and information today. He should absolutely have an EEG. I am so sorry the neuro isn't being more pro-active.

devon said...

Still praying hard for you guys and Austin!! Miss working with you guys!