Today, I’m pleased to introduce you to a new guest blogger, Scott Newport. Some of Scott’s family’s story has been shared here before. (Good-Bye Evan Newport, Evan Newport All Around Me, The Evan Newport HOPE Awards, and The Longevity of Grief) You can read more about him at Different Dream Guest Bloggers. In this post, Scott addresses an topic about which he’s passionate–effective and graceful parent advocacy. See what you think.

Brick Throwing Stops Today!

Getting struck by a tumbling brick thrown from a towering institution window was the way I felt when I first looked up at the sterile counter and asked the woman peering down at me if she could help. “Yes, we do some of that,” she replied. “But not the way your family wants it.”

The grueling question I was asking was whether they could help us care for our dying son. I was envisioning that every time we were in a crisis we wouldn’t have to travel to a hospital. I had heard that some hospitals in the country were trying to embrace not only the child but also the family in a home setting. Living in a large metropolitan area allows for many institutions but, so far, I had found no one up-to-speed with our needs.

Our needs revolved around our son Evan, who was born with a terminal heart condition and other serious medical conditions associated with Noonan Syndrome. Our family has struggled over the last seven years knowing our son would die young. With a breathing tube, a feeding tube and full-time nursing staff, our life with Evan is complicated at times. As a father, I often feel I can’t hold our family together by myself. As I stood alone at the “help desk” that day, I was asking for permission to let Evan die at home. The catch: In order to receive palliative services, Evan had to be an in-patient at the hospital.

A while back, Evan had a so-called “simple surgery” that went bad. What should have been a three-day stay at the hospital turned into an eleven-day end-of-life event. We weren’t able to feed Evan after the surgery; his body was shutting down. Eventually, he was sent home from the PICU with these words: “There’s nothing more we can do, Scott. If he stays here, he will surely die,” the caring doctor explained. “We may be the ones killing Evan.” That was the week I first found myself the target of brick throwing.

Desperate for help, I went to visit the closest of our local hospitals to talk to a nurse manager I had come to trust over the years. She knew Evan well from previous ICU visits. Words she’d spoken years earlier rang in my head: “If you ever think Evan is dying, please bring him in for an assessment. If it seems like it’s the end, I will help you get him home.” This was our wish; it was a choice my wife, Penni, and I had made shortly after Evan was born. Before I left, my nurse-friend hugged me, handed me a glossy brochure, and told me to call the number.

Before I even left the parking lot, I dialed the number. In my mind I was ducking as I imagined another brick poised and ready to be hurled my way. As soon as the voice on the phone said, “Yes, Scott, that is what we do and we can come to your home tomorrow,” I looked up to the sky and thanked our God.

When I got home, I showed Penni the brochure and told her that a nurse and doctor would be coming out from a pediatric service called Walk with Me the following day to speak with us. I was so amazed these people were coming so quickly to see our family. I knew we had connected with some very special people. It was obvious to me that they “got it” and that setting up an appointment in a week or so was not an option.

Over the next few weeks and then months, we came to find out how much the Walk with Me team would embrace our family and make our complicated life a little simpler. Even though we have a home ICU and nursing staff of our own, the team was able to help in ways we’d never thought of before. For instance, now we could have blood draws done at home. Instead of Evan having to make a trip to the hospital to be poked by a stranger, he now has loving arms embracing him and familiar surroundings comforting him. We are never even asked to step outside the room.

I think the greatest thing about the team is that they know that kids like Evan are very complex. These kids can experience a near-death illness one month and, the next month, be smiling and wanting to play outside. Not only is Evan complicated, our family dynamics are such that we could never survive without the Walk with Me team.

I could go on and on about Kim and Dave or about Matique and Dr. Jeanne. I could talk for an hour about how each time someone from the team comes to our home, they brighten our often-dark journey with a smile. But I guess the best way to explain what these folks mean to us is for me to share an article I wrote recently about Linda, one of the fine people at Walk with Me.

I hope you can see, through the story and poem I wrote, that no bricks will ever be thrown at our family again thanks to Walk with Me.

Share Your Experience

Have you ever had a brick throwing experience similar to Scott’s? How did you advocate for your child? What hospital resources or personnel helped you? If you have answers to any of those questions or want to ask a question, please leave a comment below. Maybe together we can put an end to brick trowing all together. Wouldn’t that be grand?

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