Taking A Stand

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.

Comments

12 Comments

Leave a comment
  • this post brought tears to my eyes. I totally believe in standing up and advocating for our families because we really are the ones who spend the most time with him. I am also impressed that the doctor admitted to being in the wrong….it not only released you from your anger it hopefully will help him to grow as a physician.

  • Oh lady, I'm sorry that happened. Well done you for standing up to the doctor and demanding what you wanted. You should expect nothing but the best treatment for your daughter. I'm wondering what happened next – did she go to the other hospital and were there any answers there? Hope so. Hugs.

  • You GO, Lisa!! Your Mom referred me to your blog, knowing what you've gone through in terms of advocacy was mirrored in what Ken and I had gone through in the past 3 years. I'm so proud of you… stand up!! Question everything!! Your tenacity, personal integrity and values will not let you down — now, or ever! (with love, and hugs for Avery! ~Gail)

  • Wow, bless her and go you. I am finding my voice, now that I'm a mother, but I still find it hides on me when I need it most.

    Found your yummy mummy blog from the Tuesday's Toot post, and followed to here… I'll be following more and sending lots of good strong energy to Avery.

    April

  • Wow Lisa, Thanks for sharing.

    No one really tells you when you become a parent that you will also become an advocate and a loud one at that in order to get the things you need for your child(ren).

    Good for you for listening to your intuition. I'm also really proud of you for telling the doctor what he/she needed to hear. You've made a difference in the lives of other children that will be going to see that doctor in the future.

    You GO GIRL!

    Jenny A. 🙂

  • Lisa,
    This is the first time I heard the other part of the story. It was heart breaking watching you walk out your door on that Friday night with Avery's stuffed animal in your arms. The whole drive back to Kitchener I worried about all of you. You are an incredibly strong and loving mother. I am honoured to call you friend.

  • I know I'm posting late, but I hadn't been reading my blogs lately. I'm glad I finally got to this. Wow. Powerful. Made me so scared for you, but I could also feel your strength.

    Wishing the best for you and your little, sweet girl.

  • Oh, wow. How scary. I am so, so sorry. And you are THE BEST MOM ever for speaking up and for asking questions and for saying what is on your mind. When it comes to your child's health, screw good manners. I have been the same way – when my son was in CHEO for two weeks with his pneumonia I asked a billion questions, I made sure I understood what the docs were doing, etc. Good for you for speaking your mind. I hope you get some answers! Take care… xoxo

  • Oh Lisa…..I have tears at work. You go girl!! You are an amazing Mom and Avery is so blessed to have you. It's so scary when we learn that we can't always trust what doctor's recommend. I think anyone that has had a child with medical issues eventually learns that. You are such an inspiration. Big hug.

  • Damn right that doctor needed to hear he made a mistake, and a huge one at that !

    It's tough to hear your child has any kind of health issues. I understand how that feels, because two of our kids have issues as well.

    Hugs to you,
    Lisa aka pbajmom (on twitter)

  • Hi Lisa,
    I wanted to know more about how our lives and our journeys were the same…what a scary story and another example of how Mommy Warriors need to fight for their kids at all costs. Doctors are human, and while they are incredibly talented, they make mistakes and need to know. I've confronted several doctors telling them what my son needs or even that their words hurt us and could have been said with more respect (totally NOT my personality, but again, I'll do anything for Zack).
    Avery will learn from you how to advocate for herself…the best gift a mommy can give! Well done!

Leave a Reply

Your email address will not be published. Required fields are marked *

You may use these HTML tags and attributes: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <s> <strike> <strong>

All images and text are copyright © 2017 Forever In Mom Genes