I’ve never considered myself a very assertive person and definitely not a confrontational one.
Over the past two years we’ve worked with cardiologists, neurologists, therapists, orthotists, geneticists, pharmacists—so many people whose title ends in “ist”. There was a time when I followed a doctor’s advice without question. They were the professional – the expert. Who was I to question them?
Now I question everything. I research every word. I seek second and even third opinions. I don’t care if I get glared at. I don’t care if I’m a pain. I don’t care if I’m disliked. I do care about my children. They are my priority.
Last week my husband took the kids to his parent’s while I hosted a party at our house. At 11:30 p.m. he phoned home to tell me an ambulance was there to take Avery to the hospital. She was having a seizure that wouldn’t stop.
I met them in the ER. The seizure eventually stopped on its own without medication. After 8 hours, they sent us home and told us to follow up with our neurologist. The following afternoon, I put Avery down for her nap. Thanks to our family, we now have a video surveillance camera in her room. I could see her lying in her crib on her side, staring, not blinking. I ran to her room as her eyes began repeatedly flicking from the centre, to the right.
It was happening again. Another Convulsive Status Epileticus Seizure.
I checked the clock and started timing and I called for my husband who was working in the yard. At the five minute mark, I phoned 911. She was still seizing and had started vomiting and she began to choke. I reached in and pulled out a long strand of spinach, brought up from her lunch as she vomited and was now caught in her throat. The paramedics arrived. Avery stopped breathing and they had to breathe for her. She was still seizing when we arrived at the hospital. Most seizures generally last a few minutes. Hers lasted over 30 minutes and required multiple doses of medication to get it under control.
This was the first seizure that my husband and I had seen from start to finish. It was terrifying.
We were told that we would be seen by the pediatrician on-call and waited nearly 5 hours before he came to see us. I was livid. Not only because we had to wait so long, but because this was the same doctor I had taken Avery to see years ago to address milestones not being met and the struggle to feed her. She was losing weight and we were justifiably concerned.
He walked in a said, “Hi folks. How are you?”
“Not good,” I told him.
“Of course,” he said. “This is Avery? How’s he doing?”
“SHE is not well.” I told him. “Actually, you’ve seen her before. Several times.”
“Oh really?,” he said, flipping through his notes.
“Yes really. And do you know what you told me? YOU TOLD ME TO RELAX. That Avery would be fine. That she would eventually eat, but I needed to try harder.”
I looked that man, that “expert”, straight in the eye and told him that when we came to him for help, he dismissed us. I told him we found help elsewhere and that our concerns, the very ones he belittled, were validated.
I explained that in no uncertain terms would we be staying at this hospital. We were going to be transferred to the university hospital to be seen at the Seizure Disorders Clinic.
He made a phone call and told us that an ambulance would be there to transport Avery within the hour.
I thanked him politely and then he thanked me.
He said, “I respect you for having the guts to tell me that I made a mistake. I needed to hear that.”
At that moment I felt a huge weight lifted—relieved that Avery was on her way to a place where she would be looked after and we would hopefully get some answers and guidance. I also felt relieved to shed the heavy burden of resentment that I had been carrying around.
As I said, I’m not an assertive person. I will do nearly anything to avoid confrontation, but when it comes to advocating for my child, all bets are off.