What Scares You?

Thursday night, Pete and I made a comment about how Faith was a little off.  We didn't know what it was, but we both agreed that we felt like she was going to have a seizure.  I often have this feeling before a seizure, it is my mommy radar/God feeling.  I know it well, and I am almost always right on with it.

About 12:39am, I started to feel Faiths leg twitching, and when I looked over, she was in a full seizure.  I'm talking, big, full body, face, drooling etc.  It had been almost 10 minutes, so we found the Lorazepam (Ativan) and I administered it rectally, because that usually stops the seizure immediately.

Well, the seizure stopped for about 2 minutes, then she went right back in.  She was snoring and her eyes were open and were twitching.  We waited a few more minutes, then decided we needed to call 911, instead of administering another ativan.  

The abulance arrived and things did not go as they usually do.  The medics came in and scooped her up immediately, and went straight to the ambulance with her.  They called another ambulance and the next 2 medics went into the ambulance, so there were 4 people working on her.  It was kind of surreal, as parents, to be standing on the side of the road...not knowing what was going on, watching the busyness going on inside the ambulance. 

After about 10 minutes I was allowed in, without them really saying anything about what was going on, and we headed to the hospital.  They even cut her shirt off!! (Which was one of her big sisters shirts...oh well!!)

She was having random movements, was hooked up to the ekg machine, had an iv in her arm and had been given a shot of Medazalam (another sedative), had an oxygen mask on and were suctioning her secretions on and off all the way there.  We arrived at the hospital to 11 professionals meeting us in our room.  The doctor, 4 nurses and 6 paramedics. 

It never happens like this. 

We were told the seizure lasted a total of approximately 35 minutes, and it was a few minutes after they administered the medazalam before the seizure stopped. 

They did a catheter urine sample, more bloodwork, an xray, and monitored her vitals for the next 3 hours.  She was being watched for another seizure.

The tests all came back normal, and the doctor said we could leave as soon as she woke up and was able to walk around a bit.  So, after she was unhooked from everything we started trying to walk again.  She was still so sedated and was favouring her right side...but after a few tries, she was able to walk a short distance.  The nurse brought her some orange juice, and Faith had some, but threw up afterwards.  We were finally allowed to leave by 4:45am.

All the time I sat there, watching her breathe, watching her eye movements, watching the monitor...I couldn't help but thinking about SUDEP.  Sudden Unexplained Death in Epilepsy.  With Faiths sleep issues, and the suggestions from the doctor recently, about getting her to sleep in her own room, really had me thinking this time.  If she were in her own room, would we have gone up in the morning to find her dead?  The seizure took 1 mild sedative and 1 major (injected) sedative.  Would it have stopped for her, on its own?  I know this is not the case, as she is fine now, but what if?

Standing outside the ambulance, we wondered if she was going to be ok.  I wondered if she was going to make it through this one...The constant fear of SUDEP has kind of kicked into gear for me.  I couldn't imagine our lives without her.  All the struggles we go through are minimal, compared to the joy she brings to us all. 

So, while I know that we are not supposed to have fear, I don't know how any parent, can not worry about this possibility.  And no, sleep training is not going to be happening anytime soon.  How could we live knowing that we are unaware of a seizure?

What scares you?