EMU - epilepsy monitoring unit

I downplayed the terror I felt because I had to. Because I couldn’t just lose it in front of him. Because he knows it’s serious, but he knows I will keep him safe. And that “keeping him safe” part falls apart a bit when I can’t keep it together in front of him at the precise moment he feels his life is really, actually in danger.

******

I have never played a Wii before (yep, I’m old and boring). But the neurology team thinks it might be a good idea to help get him active, to induce a seizure. So far, he’s only had 2, and one didn’t get caught on camera since it happened in the bathroom.

So we scroll through the games, all pretty kid-oriented – this is a children’s ward, after all. We settle on a variety of Mario games. He is beating the pants off me as usual…now, I can’t remember if it was the “riding dolphins, jumping through hoops” game or the paint-gun-splat game. But we are laughing, and having fun, standing there, waving controllers like happy idiots. In the back of my mind I think: "It's ok if he doesn't have seizures. We're having fun anyway. We're bonding. We're being mother and son. But I hope he has a seizure, and I hope he doesn't hurt himself."

BOOM.

He is down. First thought: good. He’s having a seizure. Brian, press the button. He presses the button. We’re on the floor with him, keeping his head from hitting the ground. I am sitting on the floor behind his head; he is stretched out on his right side. Nurses rush in. This one is different. He can’t respond. His eyes are tracking every which way. He is drooling a river, and he sounds like he is choking. He’s turning blue. He’s never done these things before. The rigid limbs, the convulsing – these things, we know. The other stuff? Never, ever. Not once, in the hundreds, maybe thousands, of seizures we’ve seen in the last ten years. A doctor rushes in and tells me the blue face is because the seizure is compressing his lungs. He promises me it will pass. I have tears rolling down my face, and I’m trying to believe him but my baby sounds like he is choking and he doesn't seem to be breathing. Why isn't anyone as scared as me? But after a couple of minutes, Doctor is proven right. Color returns. He gets quiet. And then: he can’t talk, and he sleeps the sleep of the dead. We’ve never seen this after a seizure, either. Doctor says it's normal; I know this - I've read all about it. But it's not normal for HIM...but neither was that seizure.

He has another like this in bed hours later, when I’m out taking a walk. His dad calls me and I rush back. The seizure is over; they had to give him oxygen. He can’t speak. He can only moan, and grimaces like he’s in pain. I can’t get him to talk to me, and I’m terrified. He can always talk to me right after a seizure…sometimes, during. He falls asleep, again.

He wakes later, and he’s ok. Small seizures, a dose of rescue med and regular meds, and he’s mostly ok. No more scary seizures.

I worried he would have a cluster today, and maybe wouldn’t get to leave the hospital, but he’s had no seizures at all today. We are home.

I am just now getting around to having a really good cry over all of this. I’ve never seen any of my children in quite so dire a place before. My head knows those seriously fucked up seizures were a result of complete med deprivation, something that hasn't happened in 10 years. My heart is scared it will happen when he is home, sleeping in his own bed, a floor away from me, and I won't be able to save him.

It's been a minute.

Ok, it's been more than a minute. I looked at the date of my last post and it's been...years? Has it really been years?

Life with epilepsy is tough again, and I need to write. Maybe it will help someone - maybe nobody will see it. Either way, it's therapy for me.

He did...ok, during middle school. He wasn't plagued with seizure clusters like he had been in elementary school. He hasn't been hospitalized for seizures for years. But he has had enough of them - and accompanying post-ictal weakness - to have a lot of school absences. I kept wondering if they should really pass him each year in middle school; he kept falling further and further behind.

And now he's in 9th grade. Today started their 3rd week. He's already missed 2 full days of school, and several other periods, due to both seizures and the chronic constipation issues. Today I got a call that he had another seizure during P.E. The school nurse wants me to consider having him drop P.E. because he's had several seizures during that class. I understand, but it is his FAVORITE class. For a kid who has to do so many things he doesn't want to, and not do so many things he DOES want to...that's a big thing. My heart hurts just thinking about taking it away from him. Yet another thing epilepsy is robbing from him.

I looked at his gradebook online yesterday...F's across the board. Assignments missed. Quizzes he can't make up, because they were for present students in class that day. Bodies of information he is missing. And I sit and weep because I have no idea how I will ever catch him up. I work full time, too. I don't have a partner. And his dad, though he is involved, works full time as well.

I have gently asked Aaron to do online school. For a child who already feels different and isolated because of his illnesses, this is like asking a 3 year old if you can have the cookie back.

No. He doesn't want to do online school. He wants to be with other kids, even though he suffers. Even though he knows at any minute, his body could go weak, then rigid, then make him fall and convulse and maybe hurt himself badly...he wants to be there.

So I look at the gradebook and I take one assignment at a time and I help him and know it's like trying to turn the ocean red with one dropperful of color. I wonder if our time and effort even matter.

It is hard not to feel like I'm failing. I know that I need to find my victory in the fact that he still wants to TRY. But it feels like I am just losing all the time. And I can only hope that he doesn't feel the same way, because it already kills me know what he goes through all the time.

Back to reality

I haven't written here in awhile. I didn't need to. The summer was largely calm, as far as seizures go. Aaron was at home pretty much all summer. I didn't need to worry. Home is calm, home is stress-free, home is fewer seizures.

I was so nervous about him starting 6th grade. New school, new class structure, much more movement. I kept thinking back to last year and how much school he missed and how horrible it all was.

And last Wednesday was our first day of school. It went perfectly. In fact, he didn't have any seizures until Friday, and even that was a very brief one, in class. He even went to a sleepover at a friend's the next night, and he was completely fine.

And today about noon I got a call from the school nurse. Aaron was in her office, having had a seizure and fell and scraped up his elbow. He wanted to rest for a bit, and see how it went. I got another call a half hour later to come pick him up. I've been close to tears ever since.

He was weak and trembling. Could barely walk. He could barely feel his legs, like he did so much last year. I kept telling him that it's just anxiety, that his legs are strong and work fine. Of course it didn't help, why would it? I feel so impotent against this beast epilepsy, and the havoc it wreaks on his little body.

I had just started to hope, too. I had just started believing I could maybe look for another job and get out of this very bad career situation I am in now. I even started looking at nursing programs - going back to school to become a nurse. I thought I could make plans for my future that didn't have to bow to seizures.

And in one damn phone call, it all came crashing down. This...this is why I don't hope much anymore. They always, always come back. 

Milestones

I am a blubbering mess. Today is Aaron's promotion ceremony from 5th grade.

Both of my older boys had a 5th grade "graduation" ceremony - in Albuquerque, 5th grade is the last year of elementary school. It's the longest time they will spend at any one school - 6 years - because middle and high school are only 3 and 4 years respectively. It's a little bittersweet to say goodbye.

When Joey and Quent completed 5th grade, it didn't seem like such a big deal. We happily looked forward to the next school adventure of 6th grade.

But it's different with Aaron. I honestly didn't know if he'd survive until this point, and if he did, I wasn't sure he'd pass 5th grade. So much school missed due to seizures and not feeling well. But here he is, thanks to a great/patient teacher and a school that really cared about him. And not only am I crying for this accomplishment - which is huge for us - but also a little out of fear as he steps toward greater independence and what that means for him. I'm a little afraid, to be honest.

I began writing a thank you card to his teacher a few minutes ago, and it has reduced me to tears. I will miss her, and these people who so wonderfully cared for my little boy during all those minutes and hours when I could not be with him.

Today I will celebrate a boy who is stronger than anyone I know, and know that when they call his name, it is a

REALLY.

BIG.

DEAL.

Predictably unpredictable

I knew it wouldn't last. That lovely, blissful, almost-seizure-free period. He had a seizure at school on Friday, and had to come come home. He was with his dad for the weekend, but had a couple on Saturday, and several on Sunday. I thought he might be ok yesterday, because he was fine when I dropped him off at school. But I got a call around noon; he'd had a seizure and fell and hurt his head and his shoulder. He didn't have any more seizures yesterday, but the episode left him with a completely numb right arm & leg. That used to happen a lot; he was hospitalized for it last year when, for nearly a week, he could barely use any of his limbs. The EEG showed nothing, and it was considered "functional weakness." That is, his body just temporarily paralyzes and there is really not much we can do about it. It's some kind of psychological protection, and there isn't a pill in the world to fix it. I tried visualization with him before; it actually helped once. But never again after that.

So, I missed another half day of work. Well, I "worked from home." For a job I still do not enjoy - at all. I wish I could just keep earning the same money, just for taking care of my family, but I've learned not to invest too much time in fantasies. And besides, for all the dislike of it, at least it takes my mind off seizures for awhile, sometimes.

I was thinking this morning how glad I was to be past the baby stage, when everything had to be locked up and put up and they needed my attention every minute. But at the same time, at least it was predictable - I had a fairly good idea of what each day would bring. And I miss that a little bit.

I thought it was chaos then, but I had no idea what that word meant until epilepsy came along.

A Reprieve

Remember what I said about hope being a bitch? Yeah. Hope is feeling angelic, for now. The past week has been gloriously NORMAL. Ok, maybe not normal for us - normal for us is lots of seizures. But good normal. Normal people/family/kids normal.

Today is Tuesday; Aaron hasn't had a seizure that I've seen since last Tuesday (his brother saw one in his sleep last Friday). He's been running around playing, riding his bike, doing all kinds of active stuff. I'm getting a bit further from the "waiting for him to jump out of his skin" mode, although it's always quietly in the background. However long this seizure-free (or seizure-reduced) moment lasts, I'm enjoying it.

He started a new med last week, Lamictal, and we're still on the first dose of a 10-week titration schedule. He often has a honeymoon period with a new med; it works great at first. After a while his brain gets bored with being reined in, and neurons start partying like very bad frat boys again. So, we enjoy it while it lasts. I don't know if he thinks about this, but I do: the seizures aren't gone for good. The past 6 years tells me so.

Over the past few days I've worked on getting his Boy Scout uniform patches on; he proudly tried everything on this morning so his stepdad could see it. Their meetings are on Tuesday nights, so he'll be going tonight. I honestly hope he gets healthy enough to be able to do camp outs & such, but for now, they are an "only if Mom can go too" thing.

So...Lamictal, Depakote, Banzel, and Keppra. That's where he's at now. The cocktail is doing a good job for the moment.

Feeling fearless...

Something

I can't deny this: he's had a few good days seizure-wise. He's had mostly just single seizures (one a day) and a few minor twitches.

He has been wanting to join his brother's boy scout troop for awhile. I sort of put if off - I'm not sure how it will go. I don't like the idea of him going on weekend campouts without me there, so might have to go (ugh). They do them once a month. I know for sure I'm not yet comfortable with him going on a week-long boy scout camp. Not with the frequent clusters he's had.

But he loved the meeting tonight, and he needs... something. Something to look forward to, to feel good about, to work towards. And maybe he'll continue to have more bad days than good, and maybe he will miss a lot of meetings. But it's something.

Besides, big brother Q will be there with him, so that makes me feel better.

I'm glad that today, HE felt better.