Epilepsy is something that I have always been fearful of for my daughter. With her brain injury it was always a possibility, but by the age of two I had begun to think that maybe we were out of the woods when it came to epilepsy. That was until January 2nd of this year.
When my daughter was born, she suffered a brain injury known as HIE, an injury resulting from oxygen deprivation to the brain, and was immediately put on a cooling blanket. It puts your body into a hypothermic state for 72 hours to allow it time to rest after experiencing trauma. As they move the body back to a normal temperature, it can sometimes trigger seizures. My daughter experienced pretty significant seizures coming off of the cooling blanket. She was put on high doses of seizure medication, but eventually was weaned off before leaving the NICU.
Seizures seemed like a thing of the past.
As time passed, the fear of seizures was always something that was in the back of my mind. I know epilepsy is not necessarily something that went hand in hand with HIE, but as I met more families similar to ours, I could not help but notice how many were affected by epilepsy. Still, it was something I would rather keep in the back of my mind.
January 2nd started pretty much like any other day. She and I woke up pretty grouchy, but that isn’t unusual for us. I laid her down on her favorite play mat and turned on cartoons to keep her occupied while I got her breakfast and medicine ready.
When I came back into the room she was giggling at something that amused her on the tv. I can’t remember exactly what it was, but I’m sure a cartoon shark was involved. Her dad had just left for work. I then filled her syringes with her breakfast (she is 100% gtube fed), and when I looked down, I noticed her head was fixed to the side.
I immediately knew something was off.
She then began to have rapid mouth movements, as if she was speaking very quickly, but she is nonverbal. Her eyes remained fixed, and then her limbs began to tremble. I immediately called my husband to come back home, because I knew she was experiencing something I had spent two years mentally preparing for. I was not prepared.
I called for an ambulance and was given instructions from an incredibly kind and calm woman over phone. At the time, all I could think was, “how could you be calm at a time like this”. Perspective is not a strength of mine at times of crisis. It was so difficult seeing her lose the small amount of control of her body that she had. I then was flooded with so many thoughts and emotions. “I’ve got to keep the paramedics from letting my cats out” , “how could you be thinking of your cats when your child is seizing on the floor” , “should I get shoes on or a jacket” , “how could you be worried about yourself at a time like this”.
My mind was all over the place, and I just felt like I was failing her.
Thank god the paramedics arrived quickly and were very reassuring. It was so bizarre seeing such a tiny person being loaded onto this gigantic gurney. I got into the back with her, not before running back for tablet and favorite stuffed moose. I knew she’d be incredibly disappointed in me if I forgot. They then gave her a shot of anti-seizure medicine, and 15 minutes into the ride to the hospital the seizures began to subside.
We were then admitted into the hospital, and she went into what is known as postictal state. It’s like she was there, but she wasn’t. She remained extremely fatigued, and her eyes were fixed. I did not know if I was ever going to get her back.
She slowly hour by hour began to return to her baseline. She even gave us a small grin. Her level of resilience is unfathomable. It has been five months, and we are still working to regain the strength we had lost from this experience, but she continues to push forward. She never ceases to amaze me.