As a mom, there are many things I am equipped to handle. I can handle almost any kind of owies, I can kiss things to make them better, I can scrub up after a myriad of messes, and I can even handle teenage outbursts of many sizes and shapes. But when my youngest daughter looked at me with tears in her eyes and said;
” Who will be waiting for me when I get to heaven? How will Grandma in heaven know me if I’ve never met her?”
My youngest needs open heart surgery, and the date was set for mid June. After several nights of her waking up crying and asking questions of her mortality, I decided to call in the pros. This was outside my level of expertise, and I knew it.
I contacted her pediatrician, who prescribed a mild sedative for sleeping, as well as the Child Life therapists over at Randall Children’s Hospital, where her open-heart surgery was scheduled to occur. Then I called her cardiologist and let them know that my daughter was having severe anxiety about the pending surgery, and asked if it was possible to move the date of the surgery up a few weeks.
The receptionist at first was reticent to pass this information along, telling me that she was sure there was a reason behind the doctor’s timeline for the surgery. I made it very clear to her that I was the one who chose the last week of school, and now I wanted Dr. King to know that I’d like to reschedule it for his earliest convenience, if that was possible. I was firm, yet polite in stating my wishes.
And it paid off. The child life counselor gave my daughter an all out tour of their new children’s hospital, including some great play therapy, where she could pretend to give her doll an IV and did a play acting surgery exercise, while explaining every step along the way. I dare say, my daughter left with a much lighter heart, and seems to be looking forward to her week at the hospital.
I was able to move up her surgery as well. Instead of waiting a month, we only have a week to go. Because I informed the surgeons of her anxiety, they were able to combine two surgical procedures originally scheduled to be spread out over 2 weeks into a one time back-to-back situation….so she will only need to check in and out of the hospital one time.
The lesson here for others is this: as a parent, it is up to you to advocate for your child. Before Caitlin was born, I was of the mindset that doctors knew best, and I followed their recommendations to the letter without question. By speaking up for Caitlin, I was able to let her doctors know about a situation they would not have any other way of knowing. This is the kind of knowledge that doctors need to know, and yet so many of us just go with the flow and don’t think feelings have any purpose in diagnosis and treatment.
It’s not the first time that I’ve been polite, yet firm, with my daughter’s doctors. I have fired pediatricians for not returning phone calls in a timely fashion, or for not speaking English clear enough for me to understand. I have switched specialists when I had the feeling that Caitlin’s first cardiologist was a just a little too tan for Oregon standards, meaning that he spent too much time golfing and vacationing vs. studying his craft. I want my specialists to be nutty professor anti-social types, thank you very much. Even when we were on the Kaiser Permanente insurance, I exercised my right to change physicians regularly. Every hospital has a patient’s rights advocate…. don’t be afraid to get to know them. And don’t be afraid to let your children’s doctors know about all aspects of your child’s health… including stresses. You are you child’s best advocate, and ultimately you are your child’s primary care AND specialist.
We just told Caitlin that her surgery is only a week away, and she smiled. She’s off the sleeping medication, and is excited to check in and start her adventure.