First-Time Seizure Clinic and Other Things I Didn’t Want to Learn About

seizures
After hours in the ER, this kid was back to her happy self. That was GREAT to see.

V’s a complicated kid.  Undiagnosed, she’s blind, non-verbal, in a wheelchair, and has severe scoliosis that’s beginning to impact her lungs among other things.  All of that said, she’s really very healthy – and HAPPY!   One thing I’ve been grateful for is the fact that she hasn’t had to deal with seizures.

Yesterday that changed.

Walking into Costco Sunday, my husband and V were drawn into the home theater section like a siren’s song, so I went off solo to find the items on my list.  5 minutes later I heard someone calling my name. I turned around expecting a neighbor or friend, but found a Costco employee who said, “Come with me, it’s your daughter…”

As I followed him the words began to sink in, fear filled me and my pace quickened to a run, tears streaming down my face.

I’ve seen V very sick, but what I saw next took my breath away.  My husband is my rock, always strong, but the look on his face was that of sheer terror.  He was holding her, she was blue and completely limp.   I scooped her in my arms as paramedics arrived and started taking vitals.

My husband said that he felt her wheelchair shake, he looked at her and saw her arms and legs flailing a little as she began turning dark purple, then she went limp.  He yelled my name and told someone to call 911 as he got her out of her chair and laid her on a nearby sofa.  He started rubbing her sternum, checked her airway and gave her a quick mouth to mouth breath. He could tell her airway was clear and she was breathing.

She was saturating OK and starting to regain color, but was still non-responsive.  They said that can happen after a seizure, and since her vitals were good they felt she was most likely out of the woods, but should be transported to Children’s for observation and tests.

We spent the next 8 hours at Children’s with doctors, running tests and waiting.  The initial results came back clear, so they sent us home with a schedule to follow up at the First-Time Seizure Clinic. One department we’d blissfully been unaware of prior to this.

Home and in bed, I spent the rest of the night next to my girl, watching her breathe.

It’s really comforting to know the support system in your community has your back.

The Costco employees responded right away, calling 911, finding me, and supporting us the entire time.  The medics were so great; supportive, compassionate and knowledgeable.  I am so, so grateful to everyone that helped us out.  Thank you!!

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6 Comments

  • as a parent I salute you for all the perseverance dedicated and determination to give a lovely childhood to your kids.. keep it going! you are my inspiration. greetings from singapore

  • Thanks for sharing your story so openly. It’s inspiring to learn about how you navigated these health challenges. What a strong and loving family you are! So sorry to hear about the addition of seizure issues. It’s unnerving how many children face these challenges. Two of our nieces and one nephew (my husband’s side of the family AND my side of the family) have had seizure disorders. Anyway, I wish you the best!

    • Thanks Karen! Seizures are scary, I feel for your nieces and nephew – and their parents! We just do the best that we can and trust that God has a plan. One of my favorite lines is from the movie Meet the Robinsons – “Just keep moving forward.”

  • So sad she had to go through this. So glad she’s back to her happy self. Praying you get the info you need and it isn’t an issue again. Love you all!

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