Friday, August 23, 2013

In Knots

It's barely 7am and I've already downed Excedrin and Zantac.

It's been a week.

Monday, B had a repeat EEG. Sleep deprived. Because we switched neurology practices, they wanted to do their own testing. I wasn't really excited about the prospect of another late night/early morning, but at least the new practice allowed 5-6 hours of sleep, as opposed to four.

I let B sleep until a little after 5am, after going to bed around midnight. We had already planned ahead of time that he would take a bath when he got up, because he said that helped the last time. He wasn't interested in eating breakfast, so I packed snacks, and we left the house at 6:30.

The hardest part of a sleep deprived EEG is trying to keep your child awake on the way to the hospital, especially when you live an hour away from said hospital, and that is with no traffic. Even leaving our house at 6:30am guarantees at least 30 mins will be added to the commute.

On the way to the first EEG, B stayed awake on his own for about half the ride. On Monday, I had to start yelling, and singing badly, and tickling his leg, before we even left town. He is not a fan of being kept awake, so the yelling went both ways.

Then, about 30 mins into our ride, he became silent. I looked in my rear view mirror, and (insert expletive here), he was having a seizure.

Of course we were on the highway, with no good place to pull over, so I booked it to the next exit. I tried timing the seizure, but my iPhone is nearing the 2 year mark, so it has begun to fail me. The second I hit the clock app, it froze. I contemplated throwing it out the window, but held back. I closed the app, and opened the camera, hoping to video some of the seizure, since timing it wasn't going to work. Thankfully, the camera worked, and I was able to get a bit of the seizure on video before pulling off the highway (I basically just held my phone in his general direction, hoping I actually recorded something useful, since, you know, I had to face forward to actually drive).

After I pulled over, I basically just made sure B was OK. I stroked his head as he seized, whispered comforting words, and waited for it to be over. Please, please, don't let this one be the one that goes beyond 5 minutes. Taking him out of the car and giving him diastat in a random parking lot was not ideal.

Thankfully, he stopped seizing after a few minutes, and immediately fell asleep. I got back in the car and started driving, paging the on call neurologist as I drove. She called back after what seemed like an eternity, and I asked her what I should do. Go to the clinic for the EEG? Go to the ER? B was OK. Sleeping, but OK. She told me to just go get the EEG done. They'd assess him there, and send us to the ER if they thought he needed to be checked.

It felt like forever before we reached the hospital. All the while I was cursing the fact we live in the boonies, too far from civilization, and the fact that not enough people use public transportation to get into the city, clogging up the roads when I'm in a hurry! You know, the rational way you think when under a great deal of stress.

When we pulled into the parking garage, B woke up, and seemed OK. He walked himself into the hospital, and was tired, but acting more like himself. We were told the on call doctor was on her way in (she apparently wasn't actually at the hospital when we paged her), and we started the EEG. It was a breeze. B was so tired, he easily fell asleep, and I sat in chair next to him, trying my hardest to stay awake.

The EEG tech didn't make him blow on a pinwheel like last time, and said she wouldn't bother him with the strobe lights, either. He was exhausted, already had one seizure that morning, and we just wanted to talk to the doctor and go. She took all the leads off, and we were both trying to wake him up enough to go when it happened again.

She and I both noticed at the same time. B's head had turned to the side, and something wasn't right. Just as I looked up to tell her he was seizing again, she was already out the door to find the doctor. I guess we lucked out in a way. The neurologist was there to witness the whole thing. Sure, I had my video from that morning, but it wasn't long at all, and it's always good for them to witness an event themselves.

After the seizure was over, we moved B into a different room to sleep. The doctor went to speak to her attending, because she felt B needed to be admitted. She wanted to give him a big dose of seizure meds, to really raise the level in his system, and make sure he was OK. Of course, we had to wait hours for a bed to be ready, but at least we were in the hospital, just in case.

I called my husband, and asked him to come from work so that I could quickly (as quickly as possible) drive home and get things for us to stay overnight. He offered do it for me, but, well, he's a guy, and I didn't trust him to pack anything we'd actually need. I was also hanging by a thread, and needed control over something. 

Because B hadn't eaten that morning, they wanted to take advantage of his empty stomach and do a sedated MRI. Of course, that wouldn't happen until 6pm, so I felt comfortable running home. I'd be back in time for anything important. My husband showed up to relieve me (I think around lunch, and I only say that because our EEG tech was eating when I left. I really have no idea what time it was), and cursed all the way home, again, that we lived so far away (but at least no traffic this time).

About halfway home I received a text from my husband. B had another seizure on the way to his room.

I was still 30-40 mins from home, and just wanted to turn around and rush back. It took all my strength to keep it together, and not go 100 mph down the highway. Somehow, though, the closer I got to home, the more calm I began to feel. Yes, B had three seizures in one morning, but he was where he needed to be. I didn't need to kill myself getting back to him. I had to relax, gather our things, and keep my wits about me. There was nothing I could do about the fact we live an hour away from the hospital, but I'd be back there soon enough, and B was in good hands.

Of course, really, I was probably just in a state of shock. I had reached the period where you kinda go numb. Where your brain just turns off so you can muddle through. Whatever it was, it was better than the raging anxiety I had been feeling.

I got back to the hospital just in time to meet with every single medical student in the building. It wasn't awkward at all walking into B's room, and seeing him surrounded by a bunch of people, who all turned to stare at the same time (as I haphazardly carried every belonging we own into the room. I might have over packed). I think my husband was relieved to be let off the hook. Let's face it, he's a good dad, but I'm the one with all the answers.

B pretty much slept the day away, waking up a few times to throw up (no one knew why, and it started before they gave him the IV meds, so it's a mystery. Maybe just the stress of having 3 seizures in the matter of a few hours, and no food).

Child life came in, and brought him tons of dinosaur toys, which he loved when he finally woke up a bit. Especially this one remote control dinosaur (that is no longer manufactured, and which Amazon Marketplace wants $600 for. I am hoping I can score it on Ebay at some point, because, seriously, he loved this thing).

Ben finally started to wake up, and get back to his usual hyper self, right before his MRI, where they doped him up again. The MRI took about an hour, so I used the time to finally eat (I had been up since 4am, and had yet to even get a drink of water), and tried to relax. Once it was over, we sat in recovery for a couple hours (watching a doped up kid try to eat a thing ever. Brought some much needed comic relief to the day), then headed back to the room.

By that time B was starving, but of course it was around 8:30pm, and the kitchen was closed. I went to the 24hr cafe, where I attempted to get him a grilled cheese, but even though they had bread and cheese, the guy refused to finagle me a sandwich. So, s'more pop tarts and chocolate milk, it was!

Because B had slept all day, he didn't end up going to bed until around 1am, when I think the nurse took his iPad away and called it a night. I fell asleep well before that, as hard as I tried to stay awake. The next morning he was back to himself, and after another dose of IV meds, and a visit from a friend (thank goodness, because B was so bored he was climbing the walls), we got to go home.

His MRI came back fine, as did his blood work. Nothing glaringly obvious as to what is causing his seizures. We have an appointment with genetics Dec 3rd (which seems far away, but I'm told is actually great. There is a waiting list right now, so getting a date at all is apparently a miracle).

So now we wait. We wait to see if he has more seizures. We wait to see if his meds work. We just wait. We have an appointment with our pediatrician next week, and a follow up with neurology in a month. I hate no knowing why this is happening, but seizures can be such a mystery. For now B will continue to sleep with me, and I somehow have to find a way to be OK with him starting school. Every fiber of my being just wants him home with me, all the time. I just can't trust anyone else, even though I know I have to.

The fact that B has epilepsy is taking it's toll on him, too. Having to wear a life jacket whenever he goes swimming (but it's the shallow end, mom!!!!! Insert giant meltdown here). Having to quit gymnastics until we know things are under control (he might not be able to ever go back, since it's just too dangerous in case he was to seize). The fact that school will be different for him. He'll need to be helicoptered over, at least for a while. Yesterday he got really  upset over something, and said, I wish I never had seizures!!!

It broke my heart.

I wish you never had them, either buddy. It kills me not being able to fix what's wrong. But, maybe I can find him that super cool dinosaur, and make things a little more right in his world.

B, with the coolest dinosaur ever. 


  1. So sorry atleast the hospital was able to witness seizures one good thing

  2. Oh man, I am so sorry! You're handling it great and I am glad you have confidence in the doctors. Hugs!