The First Seizure

How sweet she looks strapped into this retro looking wheelchair. We laughed about how it looked like a prop from the horror movie, “The Changeling.” We made jokes, but what our family had just gone through was far from funny. 

Though our daughter has spent her fair share of time in pediatric wards over the past few years — always without complaint and never failing to win over the staff with her sunny disposition and ready smile — this week was truly frightening. 

 

Though our Avery has many challenges, we try not to focus on the “what ifs.” Research tells us that many of the significant medical issues for our daughter tend to present later in life, if at all.

Since Avery’s initial diagnosis we’ve had our ups and downs. Mostly ups. Doctors told us that Avery might never walk, or talk but she has proved them wrong by doing both. Tuesday however, after celebrating the great results of her perfect hearing test, things took a nasty turn.

I went to wake Avery from her afternoon nap — a nap I let go on longer than usual after a long day of appointments. When I entered her room I found her unconscious. She was limp and covered in vomit. 

I did a finger sweep but I couldn’t feel any obstruction. She was breathing, but in a laboured, raspy way. I remember screaming her name but she wouldn’t wake up. I called 911. I couldn’t believe this was happening. I thought, “This is like a scene from a horrible movie. This can’t actually be real.”

I carried my daughter downstairs and found my son in front hall, looking alarmed. I explained what was about to happen so he wouldn’t be afraid when the paramedics arrived. This little six year old boy pressed himself flat and small up against the hallway wall and said in the middle of it all, “Mummy. You don’t have to worry about me. I’m fine. Just help Avery. I’m okay.” This would’ve broken my heart if it hadn’t already been shattered into a million pieces.

Big brother made this card for his little sister in hospital.

 

The ambulance arrived minutes later and they worked on Avery on the living room couch. It’s a blur, but I recall our neighbour from across the street, a pediatrician, standing behind me. I quickly called my in-laws to come over to take care of our son while I road with Avery to the hospital.

Avery was unconscious for nearly three hours. They ran tests in the ER including a lumbar puncture, a CT Scan and blood work — all came back normal. We were quarantined nonetheless for 48 hrs pending the results of a meningitis culture. It’s hard being isolated, but at least we got a private suite, six rooms down from the “happy” place where both of my children were born. 

Three nights spent in the pediatric ward with no clear answers other than a virus may have triggered a seizure (two actually) and we would have to wait to see if it was an isolated incident or if it was Epilepsy. The doctor believes it’s the latter. I hope beyond hope that he’s wrong.

We were discharged after four days, and so relieved to be home. A few hours later, Avery’s temperature skyrocketed and we were back in hospital. More tests were administered and once again a mystery virus was deemed the culprit.

Today it really hit me — how serious and scary it all was. I’m an emotional person, but in stressful situations something takes over and all emotion shuts off so I can focus on what needs to be done. I think most parents have this ability. 

We put things in a box so we can take charge. I was calm and in control and in charge. Until this afternoon. Today I went out for an hour to pick up some groceries, specifically lots of hydrating yummy foods that Avery will possibly eat. A block from home I heard the sirens. Then I saw the firetruck heading toward my house. My heart stopped while I waited to see if the truck would turn down my street.

Thankfully it carried on. I cried the rest the way home and carried on sobbing into my house. I couldn’t stop.

And then I did.

I wiped my eyes and hugged my babies and my husband and then got on with making dinner.

This week was the worst of my entire life. I feel frightened in its wake but so grateful that we came out the other side. I fully anticipate many more heart breaking, terrifying and teary moments to come. However they will not overshadow the heart fulfilling, happy-tear moments that are surely in store for us as well.

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  • Okay, now that I’ve read the entire, post, I have to say you are one strong mama. How scary that must have been for you! I’m so thankful that she is okay and at home again. Please keep us updated on her situation. Hospital stays are not fun at all… every procedure she went to must have been so horrible for you to watch. I’m keeping you guys in my thoughts.

  • Wow. I am filled with emotion. First, I love how outwardly positive you seem to be staying during what is no doubt an impossible time. Your strength will help your little girl.

    Secondly, I all but balled when I read what your son said. What a sweet big brother.

    Good luck along your journey. I’ll be thinking about you and sending you healthy thoughts.

  • I'm glad you shared your story, Lisa. It is inspiring to read, on so many levels. What an incredibly scary situation – and what a strong, amazing mother you are. I can't imagine having to deal with all that . . . and what a trooper little Avery is. Lots of prayers and thoughts coming your way for the coming weeks.

  • Reading this made my heart hurt.

    I can’t imagine your fear and panic, it must have been 10x what our imaginations can come up with. There are no words, but know that you have a virtual safety net of care and concern, and a safe place to rant anytime you want or need.

    Supermom is a hard job. Make sure you reach out to anyone and everyone when you need it…you have earned your stars this past week.

    Take care of all of you. Will be thinking of your family all week.

    Jen

  • You are absolutely inspirational.

    I found you through a tweet from YummyMummyClub today and wow!

    Sending you and your family love and support. You are amazing and I hope that I am even a fraction of the role model for my son, that you are for your children.

    Thank you so much for sharing.

  • I can’t imagine how scared you must have been. That’s a worst nightmare situation.

    My brother had epileptic episodes as a child but has been episode free for years.

    I wish you and your family strength and more happy-tear times for the present and future.

  • Strength and positive thoughts coming your way. Luckily you have a strong support system around you and two little kids who are brave, intelligent and caring little people. Your family will get through this, and in the meantime, keep sharing. Friends make getting up every day and dealing with difficulty possible.

  • Holy Crap! I just read this now, I was offline most of the weekend and now I feel guilty because I didn't get to read about what actually happened. Sarah didn't really get into specifics. You must have been terrified! So glad to hear that everything is going well now, and I think I might just betroth your son to my daughter now – she's going to need a good one and he sounds like hi fits the bill:)

  • Wow I had to gather myself to be able to put words together to post. I can’t even begin to imagine what this must have been like, except how scary it must have been for you. Reading your son’s words brought tears to my eyes (and I don’t cry easily), what an amazing big brother.

    Your strength and positive outlook inspires me. Your post will change many people, thank you for sharing. I will keep your family in my thoughts.

  • I'm so sorry to hear about everything you've been through. Your little girl is an amazing person, beautiful too. And your boy is a brave one too. It's every parent's fear – illness in their child. The thought of it paralyzes me. I have huge admiration for your strength and the way in which you deal with things. Also, I've really enjoyed reading through your blog – your writing is very captivating.

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