Glimmers and shivers.

So, it's been almost 3 months since Aaron had his RNS implanted - the device that is both a constant EEG, and stimulator to stop seizures. We didn't get it turned on until December 10, at which point we learned the EEG part had not been doing much. It only recorded 2 seizures out of dozens. So they made adjustments, and turned on the stimulator...and it has made a world of difference.

He still has seizures, but I was convinced not as many (a few a week, rather than every day). And, he seems to be recovering from them faster - no more weakness and twitching for hours afterward. I wanted to find out if the device was capturing his seizures, so I contacted his doctor (we don't have another visit until 2 months from now). And sure enough, he said that Aaron has been having many seizures daily. And we are not seeing - and he is not feeling - many seizures daily. Which means that it's working.

It's.

WORKING.

It's hard to have a lot of hope long term, because things have worked before and then the seizures always came back, usually with a vengeance. But he is 8 school days into the new term, and hasn't had to come home even one time for seizures. I can't remember the last time he had 8 class days in a row without a call from the school nurse. I have glimmers of hope.

And even with all that, my fear isn't gone. I mean, I have had 11 years of waiting for him to fall and break a limb, or hit his head so hard he can't wake up, or just not wake up from a regular night of sleep. I will probably always want him to slow down, be careful on those stairs, don't do things that might cause him to fall because I know he can't catch himself. I don't know if that will ever go away. I don't know  if the shivers of worrying the worst is going to happen will ever really subside.

But it IS a current victory, and I'm incredibly grateful and happily surprised.

Bad day number whatever

The morning was going ok, until I heard a crash, and heard him cry out. I knew he had gone downstairs so I rushed down there. He was crumpled at the bottom of the stairs, sobbing. The dog had stepped on his foot, or tripped him, while he was going down the stairs. He tumbled down, hurt his foot badly, and had a seizure. He and I sat a good long while til he felt well enough  to stand and go back upstairs. Before that, I yelled "FUUUUUUUCK!" as loud as I could. I was beyond frustrated, stressed, sad. I'd not slept past 2:30 am the past two mornings in a row, and was not dealing with it well.

His surgery to implant the RNS is scheduled in two months. It feels so far away. It feels like he has no chance of succeeding in school until then. Maybe after then. I am missing work again...technically I can work from home, but I feel so bad about it.

I'm exhausted and stressed and I need a win. He needs a win.

Can't finish

I'm driving home, the start of a long, 3+ hour journey, and he is in the passenger seat trying to eat the breakfast I just bought him from a drive-through. His hands aren't working well because of the weakness, and he struggles to bring the breakfast sandwich to his lips. I watch him from the corner of my eye, and though I'm wearing sunglasses, I fight like hell to keep the tears that have welled up in my eyes from streaming down my face. I can't add to the way he already feels.

******

Last night I cried so hard that I thought I'd be sick. I worried the neighbors would hear me through the cracks in the window. I mean, I was wailing.  I wrote in my paper journal that I didn't want to wake up today. I couldn't do anything about that because a) I was chicken and b) I couldn't bear for any of my kids to think it was because of them.

Nobody was home but me and the dog, and I'd closed the door with her in the hall. I needed to be Alone alone.

Earlier that evening, our scoutmaster had called me. Aaron was not doing well at summer camp, where I'd dropped him off the day before. He had a seizure when we got there, and scraped up his knee (in addition to dealing with an already-sprained ankle). But he bravely wanted to try. His summer has been nothing but seizures and hospitals and doctors so far. We both wanted him to have fun and hoped so hard I thought my heart would break. So I let him stay, knowing I might get a call to retrieve him.

Our scoutmaster let Aaron's big brother (who was also at camp with him) borrow a car so that he could bring Aaron to me halfway, so that I wouldn't have to make the whole 5 hour drive up there. When he arrived at our meeting point and parked, I helped Aaron out of the car. He could barely walk. The entire ride home, even after a rescue med, his right hand was twitching. He was clearly miserable.

I'm at my wit's end, and desperate. I know we go in two weeks to get surgery recommendations from the doctors in Colorado, but it feels so far away. Treatment feels even further, especially when school starts in 1 month and I have no idea what to do about it. I am nearly certain he won't want to try regular school again but I cannot do online school again - my work is just too much now.

I feel so tired and yet, I can't rest because I am also so incredibly anxious.

Because today I watched my child struggle mightily just to feed himself a damn egg sandwich.

Beside myself

He has gotten worse. For the past couple of weeks, he's had more bad days than good. Days full of seizures, tremors, weakness, dizziness,  and double and blurry vision. Our local doc says it might be due to the really bad couple of seizures he had in the EMU, where he had his usual symptoms plus turning blue and drooling a lot, and a horrible post ictal period with headache, moaning, and inability to talk.

I'm googling TIA. I'm wondering if the increase in his Lamictal has made him worse, not better. I'm worried that all of this is taking an irreversible toll on his developing brain.

School - online school, that I miss work to help him with -  is over in less than 4 weeks, and he's already a couple of weeks behind. It's not an option to think about trying to work on at the moment.

He had one good day yesterday (Thursday) and one good day last Saturday, out of the last 12 days. I don't want to take him to the hospital, because it's more money and stress and they don't do much there that I don't do here: wait it out. At least at home he can relax and be with his family and his dog, surrounded by the familiar.

I am just so worried that all of the waiting for the appointments and surgery possibilities in Denver will just be too late.

I love my son so much and I'm devastated for him all the time.

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.