Friday, August 26, 2011

Winding Up

Its 4am and I'm wiiiiiide awake.  Funny what stress does to you.

Our sitters have been swamped with summer classes and visiting their families, so Jer and I haven't had a whole lot of time to ourselves.  I was thrilled when an "old" sitter (old meaning she's had a big person job for over a year now and left us back then) offered to watch AJ for us.

On Tuesday we went and saw the movie Crazy Stupid Love, which was SUPER GOOD.  As we walked out to our car, reminiscing about our own dating journey and all that goofy love cloud chatter that happens after watching a movie you relate to, I got in the car and gasped aloud as we pulled out of the parking lot.

I forgot to give AJ his seizure medication that night.  I panicked and panicked, as we've NEVER missed a dose before, all the while Jeremy assured me AJ would be fine.  We had started our afternoon at a much-stressed over GI appointment and then, since the weather decided to cooperate, I rushed home to grab pants and AJ's riding shoes and then drove to the sticks for riding therapy.  We got home, shoved some food in our mouths, and left for the movie.  And I totally forgot to give him his Keppra.

I called the sitter and asked if he was awake, he had just gone down 20 minutes earlier.  Waking him up to take the medicine would have been a holy disaster, and odds are he would have choked on it.  Waking him up would have required a full wakeup, and, well, we chose not to.

Fast forward to late Wednesday morning.  AJ wakes up (he's been sleeping late due to growing) and doesn't want to get out of bed.  He gives me his famous morning smile, but keeps folding over his pillow.  I walk him to the potty and he folds over the toilet, but no screaming-translation, I'm done get me off this thing.  I lift his dead weight body up and see he's having a seizure.  And by seizure, I mean drooling, the whole nine yards.  Not a cluster of absent seizures like we had seen a few weeks ago.  I set him on his bed and watched him till it stopped.  Then when he was back up to par we tried brushing his teeth.  More seizures.  His body goes weak.

Oooooooook.  New territory.  I sat him back on his bed and watched my child seize in complete horror.  No other word to describe it.  These were definitely seizures, no question about it.  He'd be fine for 30 seconds to 1 minute and then seize for 30 seconds.  Off and on.  I ran to grab his CIs and had already given him his morning dose of medicine. There was a profound amount of drooling, lip quivering (this is new) and mild twitching jerking of his upper body.  I called the neurologist's office right away.  But after a few more seizures and no calls back, I had already started pulling stuff out of his drawers preparing for the hospital.  This was in-between making sure he was still breathing and patting his legs, calling his name all through a stream of tears like something out of a freaking movie. Trying so hard to try and stay calm for my little boy, but crazy freaked out at the same time.  As if calling his name is going to snap him out of it.  I called 911.

He was sitting upright, but lethargic when the paramedics arrived.  It seemed to take forever to get clearance to go to our hospital of choice, but we finally got it and I followed in my own car.  I did not want to get stranded at the ER again.

If there has been one perk to Jeremy's new job, it is that he's been able to attend two important events in AJ's life.  The GI appointment the day before, and now a trip to the ER.  AJ was fine, crying and fussing when we walking in to his room, so we knew he was feeling better.  All in all the visit was very short and no exact reasoning was given.   A combination of the lack of medication and mayyyybe his fall last Sunday might have readjusted how his seizures are triggered.  That is much less likely than, um, my kid didn't get his medicine.

I left the ER with a rather tired boy and we stopped at McDonalds, because he was starving.  He napped as soon as we got home and was still tired when he got up, but a much happier little boy. We had friends over for pizza and it was a nice night.  It was nice to take my mind off of what had happened a few hours earlier.  However, I am making a rule.  No one is allowed to take pictures of me on an ER day.  Yikes.

Fast forward to yesterday morning, where AJ woke up happy as a lark and in much better spirits.  Only to have leads put on his head for a 24 hour EEG here at home.   I didn't cancel the appointment because, well we want to know if he's having clinically silent seizures (no outward symptoms) and we need to have this done before school starts-next week.  Clearly, he showed he could have symptoms the day before.  Anyhow, the last EEG we had was torture, for both AJ and I, so I was wound up as to how it would go.  He's done amazingly well and hasn't tried to pull that sucker off at all.  He even did well when she was putting the leads on.  I must say, the tech was fantastic, but I was prepared for horrible AJ to show his face, and he didn't. The only part his did not like was the air compressor.  Yeah.  They put the leads (electrodes) on his head with glue, then she saturated a small gauze piece with nasty smelling glue, then sticks a small sprayer type thing in a hole on the electrode and blows cold air on it all to dry the glue super fast.  His head is wrapped with gauze and then a stocking type thing, that leads down to his tail of wires and into the unit itself.  He looks like he's wearing a turbin on safari.   He did really well yesterday carrying the unit in a fanny pack over his shoulder.  I'd give him breaks from carrying it when he was eating and if we were sitting and playing.  But beware when he gets up to go and you have the unit not attached to him.  Yikes!  Of course, saying "HEY!" didn't help, because.....he couldn't hear me!

Which, is extremely difficult when your now hearing child via the wonderful magic of CIs can't hear.  ALL DAY.  What an amazing discovery as to how much he uses his hearing.  Anyhow, he was annoyed at me looking at books, because he couldn't here me.  Or his pop-tube, the puzzles, the microwave.  All things he KNOWS make noise.  Very cool, in the grand scheme of things.  By the afternoon I wasn't thinking it was so cool.  Our tree trimmers chose to come yesterday-I didn't anticipate them being here all day.  Since AJ needs to be 20-40 feet from this schmancy laptop they've set up here in the house, we were homebound.  Which would have been fine, if I could have taken him outside.  Chainsaws, ropes, falling tree limbs, chippers, and such do not provide such a great environment for a 5 year old.  He was stir crazy and so was I.  My adrenaline wore off and I was questioning why I chose to do this after yesterday's ER visit.

We went out for a family dinner last night, thanks to the same sitter.  I was never more thankful she's a nurse and was not freaked out when I told her what happened and if he has a seizure you push the button on the pack and log his activities, etc. Love her.  By 9pm, my stomach was in knots and I was exhausted.  By 11pm I was even more exhausted.

 AJ and I were up at 4am, for different reasons.  I think the last two days finally caught up with me.  While I did sleep last night, out of pure exhaustion, tonight not so much.  I feel myself winding up instead of down.  Watching your child have a seizure, and not just an absent one where he stares off into the distance, is seriously trauma.  Holy crap.  And while I harbored most of the Mommy guilt the night I didn't give him the medicine, clearly, this kid needs his medicine.  There IS a logical reason for me to be so diligent and timely in giving him his medicine.  Because if the medicine helps us avoid the trauma of watching my son seize and having his brain wig out, then guess what, 2mL twice a day should not be that difficult.  And yes I am human, I'm not perfect, but there is something about watching your child seize, that if you know it could have been avoided, that just plain sucks.  It makes you feel guilty knowing you could have done something soooo simple to avoid the consequence.

Just in case, I've set an alarm on my phone for his dosing times and I'm considering getting one of those baby video monitors for his room. Maybe not for use all the time, but it would definitely make me feel better I think.   My guess is he slept in so late the morning of the seizures due to having more seizures earlier in the morning.  Poor little dude.  I guess the most common time to have a seizure is in the morning and if he missed his night dose, then he missed the leveling off it gives him to avoid those.  Lovely.

I'm relieved he's handling the EEG equipment so well, I think that would have made things so much worse.  I'm anxious to take all of it off...well, let me rephrase. I am not looking forward to using the remover solution, which they tell me, removes varnish off of wood.  Nice. And I'm putting this on my child's head.    I'm not looking forward to that, but I am looking forward to having a hearing boy again and taking him to the park for some fun.

Now, I'm going to try and get another hour of sleep, before I get up and help my husband pack for his trip.

I hope its a quiet weekend.


  1. I held my breathe while reading this. I saw the Skinner pictures and thought you looked pale but thought lighting or whatever, no clue this had preceded it. You are amazing. I had one idea-and you probably already thought it or did it or can't do it, but I gotta share. Could you split his medicine into a bottle for home (emergency stash) incase you forget it in the car-and a note in AJ's room telling where it is and time it has to be taken? Love ya-all of ya.

  2. Oh my stomach dropped reading this. Sending you lots of prayers and hugs. You have so much on your plate.


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