I’m not sure why I never posted this back in December but better late than never, right?  Here goes….my raw account of one of our worst nights…..

Last Saturday night was a normal night. Nothing was really out of the ordinary. We had spent a couple of hours that morning at Cannon’s Special Olympics basketball practice. He was more tired than usual so we had let him dictate the pace and he chose to be very low key. When we got home, he played and relaxed. Around 6 pm, he was out cold on the couch (which is his normal as we’ve been struggling with fatigue since June). The rest of us were watching a movie. Mark got ready and left for work. At about 9 pm, Cannon sat up rather quickly and said he had to use the restroom. I told him to go on up and do so. as well as to get ready for bed. That I would compound his meds and be up in a few minutes. I sat there on the couch for about 5 God-ordained minutes (I will explain). I was really fighting sleepiness and just couldn’t move yet. But I eventually got myself up, got the meds, tubes, and flushes ready. Headed upstairs. All the while, saying to Townsend to spot me 5 minutes and then head up to pray and do our advent devotionals together. When I got to Cannon’s room, he was asleep on his bed with his backpack and feeding tube pump laying next to him. I needed to disconnect the tube momentarily and transfer the pump from the backpack to the I.V. poll it hangs on at night. When I clamped the feeding tube and turned the pump off…..all of a sudden his body began seizing. I couldn’t believe it! For the first 20-30 seconds…..I was trying to figure out…..”What did I just do?” I’m not a nurse. Did I do something wrong and cause this?” No, I quickly was confident……this wasn’t me. This was just happening. I didn’t have my phone on me and the nearest one was on the opposite end of the upstairs floor. I screamed for Townsend. “Call 911 RIGHT NOW. Tell them they need to get here quick. Cannon is having a seizure.” I heard panic from him initially. He was looking for my phone but eventually grabbed the house phone. He called and gave them info like a pro. He was my hero that night! Completely and totally. He was calm….even though I know he was so scared. This was not a position I would ever want to put a 10 year old in. It’s so much pressure. But I could not leave Cannon! I could hear Townsend’s sweet voice shaking. He wanted so badly to come up to me but I told him not to come upstairs. I did NOT want the image of what I was being forced to witness burned in his memory. He obeyed. (Thank God for that extra 5 minutes I spent downstairs….otherwise Townsend would have been in the room when it happened.). Cannon went through about 2 1/2 minutes of hard core convulsions….with his eyes rolled back in his head. He threw up a little at some point and I rolled him immediately to his side. For about 7-8 minutes, his eyes were completely fixed. He looked dead in this phase and it was so freaky. But I could tell he was breathing so there was comfort in that. Then, he was looking around…..very confused and groggy for about 5-7 minutes. And finally, he began to try and talk.  But, his speech was extremely slurred for about 30 minutes. The paramedic response time wasn’t ideal in my opinion. They arrived when he had begun talking. His biggest concerns by the way……1) No hospital! 2) Can I still go to church tomorrow? My angel boy! The paramedics did a full work up complete with a blood sugar test. He had no fever, blood sugar issue, high or low BP…..nothing to show what had caused the seizure.

A little background quick. Cannon was diagnosed with Autism 10 years ago this month. His first ever EEG was done at that time and abnormality was found in his brain. We were told then that he would either develop epilepsy at some point or this finding was just a result of the funky firings of the Autistic brain. He never had a seizure until last Saturday night. Some might remember that when our now 10 year old, Townsend, was 2…..he had 2 Gran Mal seizures in the same day. And then sporadic Petite Mal seizures for a few years. Upon testing, he was found to have the exact same brain abnormality. A Focal Seizure Disorder with abnormal electrical activity in the Parietal Lobe. He hasn’t had any episodes in several years though. Thank The Lord!

Back to Saturday night…..My hero, Townsend, called Mark and he rushed home from work. Talked to my mom and got her up to speed. Just stepped up like crazy! Oh man! Did he make his momma proud! If you see him…..please tell him he’s a hero! We then headed to the hospital for a long night in the ER. We were quickly told that he would be admitted. With this being his first episode and his complicated medical history…..they wanted to be thorough. We appreciated that. He specifically mentioned wanting a CT scan and a new EEG. To see if anything had changed from his last one. They said they would just start some of the testing while we were waiting to be admitted. Bloodwork, an EKG, and a chest & abdominal x-ray were done. Around 5 a.m., their tune changed and it was decided by the ER docs and an on-call neurologist we don’t know that we would head home and follow up with our neurologist. I can’t say I was thrilled with this idea. We were there….sleep deprived (which they like you to be for an EEG)…..and could just get it done. We knew an appointment would not happen immediately and insurance approval for an EEG can take a bit when done outpatient. But the decision was made and we had to accept it and take our weary selves home. Oh and when I say weary selves…..I am referring to Mark and I. Cannon was wide awake. Never got the least bit tired.

When we got home and tried to go to sleep…..he still wasn’t tired. Our kiddo who’s been so fatigued. He didn’t end up finally falling asleep until 10:15 A.M.!!! And only slept 2 hours! Townsend always slept so much after a seizure. Not Cannon! No sir! Always different….that one!

So, here’s where we are today. MANY phone calls, texts, and emails had to go out to all his doctors, coordinators, therapists, and support staff. We had to cancel “attendant care.” Only nurses from now on! He can’t sleep alone in his room right now. Even though we have a high quality video monitor……seizures aren’t loud. And unless he throws up and/or aspirates….if we are asleep…..we may not hear. Appointments have been made, rescue medication ordered, and a refresher of CPR nailed down for Mark and I.

We had been warned that puberty could bring on seizures. We aren’t sure if this was the cause but we’d also been told that once they started….this would probably be our new normal.

I admit to struggle this week. I about had a panic attack in church on Christmas Eve. He fell asleep in my lap and I just thought for sure…..he was going to have a seizure right there. Or anytime he sleeps. Right now, I am literally watching him sleep. It’s hard to un-see what I saw his precious body go through. It’s so difficult to not be a ridiculous helicopter of a mom right now. Every time he is tired…..I am watching like a hawk. I do know it will get better. Even if they do become regular…..we will find a groove of sorts. We have several friends with kiddos with seizures to lean on. And for that we are so thankful.

This is what happened last Saturday night as best as I can remember.  Thank you Lord for being with us!  Thank you FATHER!!!!!  For protecting my angel’s brain from damage, for orchestrating the minutes so that I would be there and he wasn’t alone.  To aspirate.  He just can’t aspirate.  His weak lungs….he just can’t.  And for giving Townsend strength and courage beyond his years.  Our only hope going forward is to stay rooted in what we know to be true and real!  We will…..even when it’s hard!