Monday, February 17, 2014

The day our world split in two

The day our world split in two was supposed to be an ordinary Sunday. I would try to sneak in a run before church. After participating in youth-hosted liturgy with his second-grade classmates, Paul and I would go to a preparation session for his upcoming First Eucharist. As it turned out, fate had other plans for us.

My eyes fluttered open a few minutes before 6 a.m. I lingered in a bed a bit. Per usual, we had nighttime visitors. Gus lay on one side of me, Paul on the other. My peaceful morning reverie broke when suddenly, Paul began to make choking sounds. I was sure he was about to vomit and roused Mark to grab the trash can.

It soon dawned on me that the sounds Paul was making were not normal at all; they were rhythmic. Still groggy, Mark and I fumbled to turn a light. Finally, I reached the switch, and we took in the sight of Paul lying in our bed, convulsing, foaming at the mouth. We watched helplessly, powerless to stop it. Paul had wet himself in the process, and Mark transferred him to the bathroom floor, laid him on his side.

Mark and I panicked. What to do? Take him to the ER? Call 911? Yes, definitely call 911. Mark stayed with Paul while I tearfully spoke to the dispatcher. Soon our bedroom was filled with a variety of rescue personnel.

Paul, looking tiny, helpless and dazed, stared up at the seven or so strange men surrounding him. 

"How long was he seizing," one asked.

Interesting question. It felt like an eternity, but I think it was only 90 seconds to two minutes.

My parents came quickly to stay with Gus and Ben. For Gus, the whole thing was a spectacle. Firefighters, a fire truck, an ambulance! Ben took it as only an 11-year-old boy can. "This is going to ruin my whole day!" he wailed, tears springing to his eyes.

As I prepared to board the ambulance for a ride to the hospital with my son, I was slightly dismayed at the mundane thoughts my brain could still produce. Should I grab a bra? I'm going to want a bra. I can't wear green socks with these black pants.

Numbly, I stroked Paul's head as we rode to Theda Clark. I could barely form thoughts to respond to the EMT's polite, benign chatter.

Once at the hospital, everyone took good care of us. I would have expected no less, but Paul remained a superstar through finger pokes, blood draws and an IV insertion. We were taken to a room for a CT scan. Through it all, Paul was responsive but not at all himself. He looked utterly wiped out, complained his head hurt. There was no trace of my funny, silly boy.

Fairly quickly we learned that all of Paul's tests were normal. Thank God. The CT scan ruled out all the major causes of seizure: brain bleeds, tumors.

I knew Paul was coming around when he quietly asked me, caressing the stuffed animals we'd grabbed, "What do my owl, my hippo, and me have in common?"

"We all have butts!" he said, breaking into soft peals of laughter.

He was referencing TriBond, a game we'd played the night before. (What do rifles, cigarettes and rams have in common? They all have butts!) Mark had chosen to read that game card specifically because he knew it would make Paul laugh. That was before. Before our lives split into before and after.

It was astonishing to me how quickly our time at the hospital passed. Two hours later and we were on our way, a follow-up appointment set with our doctor's office. I know it's not the way things work, but part of me was screaming, whoa, whoa, whoa! Let's keep him here for observation. I don't want to see the bill, but let's keep him here.

Once home Paul was completely back to normal, walking, talking, playing, eating. It was hard to reconcile the jarring images of only hours before with the average 8-year-old behavior before my eyes.

This experience is still so new. We're in after now. After is when you realize that though you've always felt so, you're not immune to scary things happening. I've learned a few things already. Daytime isn't so bad. During the day, I can watch. Nighttime is another story. At night, I can't stop picturing the events of the morning. Paul slept next to me last night so I could maintain my vigilence. I worried every time I felt him twitch.

It's strange co-existing with the normal and abnormal. Paul remains utterly himself. You would have no idea anything had transpired. On Tuesday night, though, we will need to let him sleep only a few hours so he will be sleep-deprived for his Wednesday morning EEG.

The EEG will tell us one of two things. Something could be abnormal, in which case he'd need to see a pediatric neurologist and begin treatment. Not good. Probably most likely, everything will be normal, and we won't know what caused this. Still not good. Neither, however, is awful. We will survive.

I suppose life returns to normal after these things. Eventually, I will become more comfortable letting Paul out of my sight. Certainly I will have to let him sleep solo and have faith that nothing awful will befall him. And yet, I don't think I can go back. To before. When bad things only happened to other people, when everything felt quite secure in retrospect.

For each of your children, for every day that goes by without incident, count your blessings. I know I will.

3 comments:

Emily V said...

Oh my gosh...what a terrifying thing for parents to witness! I'm sorry you had to go through that. I was diagnosed with complex-partial epilepsy (affecting my temporal lobe) in high school and have been on anti-seizure medicine ever since. I've never had a grand mal though - which that is definitely what Paul had. Keep us up-to-date on what you find out! I suppose the good news is, if he does end up needing to be put on medicine, a lot of the new ones nowadays are so advanced, they really have little to no side effects. I'll be praying for your beautiful family.

Amy T said...

Hi there - Emily told me of what happened to your family this week and thought I maybe able to relate and we could chat. I have a 3 1/2 year old daughter who has just been diagnosed with Epilipsy (basically anytime you have more than one sezuire you are an epileptic I guess). She had some major issues at birth but has been completly normal ever since so when she started getting seizures in just December last year it was the scariest thing ever. Her latest one came just this past Sunday night while I was putting her to sleep and still in her bed. She just had a facial twitch and wasn't responsive with a strange clicking sound but it was definitely a sezuire. I can completly relate to your thoughts, as I had the exact same ones. For us we have no idea what the future holds but for right now she is on some sezuire medication to try and help contain them and they are just figuring out the right dosage as she's now had 4 seizure since the beginning of December. Please let me know if you'd like to talk as I think Emily is right and we do have a lot in common and just having someone to talk to who's been through it is a great comfort.

Unknown said...

Amy, thanks so much. Your ordeal sounds unbelievably frightening. We got the results of Paul's EEG on Monday, but that day our doctor only said it showed seizure activity and didn't tell us much more. We also learned that day that it could take many weeks to get in to see a neurologist, which is so frustrating.

My husband ended up just requesting the EEG report. It stated that Paul most likely has this condition called Benign Rolandic Epilepsy. Through a bit of research, we've learned that the seizures most often occur in sleep (which was the case with his) and that kids most often outgrow the condition by their teen years. Some of that is good news, but we have so many questions and still don't have an appointment because the doctor needs to review Paul's complete medical records before we can set one up, and that hasn't happened yet.

Anyway, thanks for reaching out, and let me know, too, if there's anything I can do for you.