Thursday, May 24, 2007

Day 22: Some Days, 2 Brains Would Be Nice

The moment you've all been waiting for!

Chief called this morning....

***

Me: Hello?

Chief: Good morning!

Me: Oh, hey Chief! How are you?

Chief: Good. Good. Soooooo, her labs came back fine!

Me: Oh yeah? (obviously disappointed)

Chief: Yeah! Uh......that's good, right?

Me: Well, yeah, but I was kinda hoping that they would show a reason for all these ups and downs....you know.

Chief: Well, yeah (trying to empathize for my sake), but at least she's not in liver failure!


STOP.


I HAD TOTALLY FORGOTTEN THAT THE LABS WERE TO CHECK FOR LIVER FAILURE.


And here I was, HOPING they would come back "not normal!" AHHHHHHH!

I was mistakenly thinking that the labs were checking the level of the Felbamate in her system. Which, if they WERE off, that would show that perhaps the dosing needed to be changed. I also knew that they were doing a CBC, which I was thinking would show an infection----which might be altering her balance. All of these things are very fixable, and in my limited knowledge, might have helped her "even out" a bit. Ya know, a good thing.

I completely forgot that the labs are to make sure she's not in acute liver failure (a side effect of the Felbamate). A very bad thing!

***

Poor Chief. We went through an entire phone conversation without me even realizing the implications of those Good Labs. Chris reminded me when I called to give him the news.

But once again, Chief smoothed my ruffled feathers and let me know that she's just doing what LGS kids do. Unfortunately, it seems like a lot of the kids on the LGS message board are more "static" in their conditions---meaning, they don't seem to have these ups and downs like Michaela. But, that's just a slice of the population. I admitted that, that I didn't know of TONS of Lennox-Gastaut kids, so he confirmed that yes, people with broken brains have these fluctuations quite frequently. Not just with LGS, but with Parkinsons, and Alzheimers (at least, I think that's what he said). And, a lot of the kids I know, have many more neurological and physical issues than Michaela. Most of them don't ever walk or talk. So, I guess, if she's walking and talking PART of the time, that's better than some.

And she's been doing better the last couple of days. The lows are not so low. She's been eating somewhat normally.

***


I need a new game plan guys. If, for some reason, I start to get frustrated and bothered by her condition, then y'all need to remind me of this. That it's normal for her. You can read to me my own posts where I talk about how I understand her "new normal"--how I don't freak out anymore.

Well, to a point, that's true. I don't generally freak out at all, and I didn't this time. Yet, she was doing some kinda weird stuff that she hadn't done before. But really, if I had just stepped out of my own brain for a moment, I would've seen from the outside, that it wasn't that awful. Give it a day (or after the phone call to the ped? right?), and she would've evened out. She would've been back in the comfort zone--the place where I understand what's going on, and don't think of different possibilities of what it could be.

And I talked to my Mom about this too. I think part of my problem is that I'm a product of human nature. Human nature tells us that if there's an effect, there's a cause. In Boo's case, I'm constantly thinking, "If she's changing in her status, then there MUST be a trigger." Most anyone would probably think that. But with Michaela, that's just not the case most every time.

I have to break the cycle. I have to stop thinking I did something to cause her ups and downs.

But when DO I get alarmed? When DO I start to wonder if something needs to be addressed or checked into?

Chief said to definately call if she doesn't wake up without a lot of trouble. I told him that I'd probably call an ambulance in that case!

But I guess that's just the way it is. Not that he minds if I call for things like this. I've always known that he doesn't mind answering my questions or addressing my fears. But, I keep feeling like we're missing part of the puzzle, and I keep trying to find it. But it's not there. Her brain just doesn't HAVE all the pieces.

I need to adjust......again. To not only not freak out when she can't eat or walk, but to also stop looking for that piece, that trigger that's not there.

So, if I seem to be forgetting my new normal someday.....be a good bloggy friend and let me borrow your brain for a while? OK?

Sometimes mine just gets on overdrive!

1 comment:

Thimbelle said...

Oh honey - you can use my brain anytime! Not sure you'd want to, but, you're sure welcome! LOL!

I know the feeling; there are times when I think that if I could just find the right doctor, or the right combination of drugs, or the right braces, or the right *whatever*, we could eliminate Twinks pain for good.

We are The Mommies, and we want to fix our children. Because That Is What We Do. Whenever something goes wrong we try to fix it; nightmares, scraped knees, broken hearts, whatever.

I think that making that leap to acceptance is the hardest thing we may ever do. I'm not sure I'll ever be able to do it... I hope and pray that you can.

(((hugs)))

Thim :)