There is nothing more frightening then seeing your child lying in a hospital bed and listening to the Dr say 'Just one more test.'
When Girl X was a baby it started. Frequent high temperatures. 3 am, checking her temp and Oh lord! No. 105? Really. That's bad. What to do? Cool cloth. Tylenol. She's so red. Her breathing is so painfully slow. Hospital. I can't tell you how many times we repeated that scenario for the next 2 years. Once by ambulance.
She had been off that day. Not eating well but still playing. Pedialyte and cuddling. Bedtime. Check on her at 11 pm. She's hot. Red. Taking her jammies off and her skin feels like fire. Breathing is rapid now. Then she started seizing. I don't really know how high her temp was. I didn't check.
I called for an ambulance. My neighbor in the next apartment heard me and came over.
I wasn't particularly religious at that time. Truthfully, I feel that I had lost my faith. But seeing her there, seizing, shaking. I found myself on my knees begging God for mercy and strength. Begging for her.
I heard the sirens and snatched her up. Ran down stairs half panicked. Jumped in the ambulance when they had barely opened the doors and cried for them to please go now. They took her from me and began their routine. My neighbor grabbed my hand and we prayed together now.
Just one more test but no answers.
Months passed and the fevers seemed to be under control. No more febrile seizures but still no answers.
She turned 3 and started preschool. Time passed.
"Did you ever notice something off?"
And then I watched her even closer than ever. She turned 4 and we finally got an appointment with a neurologist and finally. An answer.
Complex Partial Seizure Disorder. Not horrible but yeah. Tests. Sleeping and awake. They watched her brain do it's thing. MRI to see if they could tell where it was originating from. It was awful. They had to give her an IV and put her to sleep. It was loud. I sat in the room with her and tried not to cry. Things could be worse. We were at Children's Hospital. I had looked around and knew, things could be worse.
She didn't shake. She just went somewhere. Her fingers would work themselves as she stared, vacant. Not there. Don't move her. It's confusing to be playing in your room and then suddenly. Blink. The kitchen. She doesn't understand how she got here. She would cry. Disoriented. She said it smelled funny. She had trouble with her bladder.
Nights of sitting by her bed. Listen to her breath. Touch her hair. Kiss her cheek. Cool. Not hot.
Watching her play then her fingers begin working. Eyes blank. Hold her hand. Brush her hair from her eyes. Kiss her head. It's over. Play with her. Don't cry in front of her. Don't look worried. Don't scare her.
The Doctors and tests scared her.
Hold her closer. Watch her when she eats. Can't have her choke.
Here's a little puzzle for you.
To get a one month supply of Girl X's meds in the US cost us $565 by the time she was at her full dosage. $565 a month.
We ordered a 3 month supply from Canada. Same meds. Same Brand. 3 months for $216.
$565 for 1 month. $216 for 3 months.
Can you explain that one to me? Because I haven't found anyone who can tell me why and have it make any sense.
The medication. We had to build up to it slowly. Half a pill a week at a time until she was taking 6 pills a day.
6 pills a day for 3 years. No slumber parties away from home. She can't shower by herself. She can't ever be left alone in the tub. She could have a seizure and drown.
2 years seizure free. We could begin taking her off the meds. Slowly. Too fast could be very dangerous for her.
Please God let this work. Please God let her be free now.
I had found my faith. I had found it in the back of an ambulance listening to the siren. I found it in the loud banging of the MRI. I found it in her eyes when she took her last pill.
3 months now and no seizures. 3 more months and we can breath. 3 more months and the likely hood of her ever having another seizure is so low it's laughable. Almost.
She will always be more likely than those who have never had a seizure to have one. Her brother is more likely than others to end up with the same affliction. The risk is small, but it's there.
We watch. We wait. We pray.
Slowly, Girl X is able to focus more easily on her schoolwork. Her reading has caught up to grade level. Getting better daily. Her memory is improving. The medication did it's job but it also took over part of her brain. Numbed it. Slowed it down. It had to. Now it's out of her system and it's like those parts that were sleeping are waking up, catching up.
We don't know what caused her seizures. Was it genetic? The constant high fevers? A fall? A fluke? We'll never know.
I found my faith when my kid got sick. It stayed when she got better.
We were lucky. We were blessed. It could have been so much worse.