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DRUMMER FEATURE APRIL 8, 2018

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A change of heart, literally

It's been nine years since Eddie Kunze's story was told, and there's been a lot of progress, since.

By Miriam Orr

Ten-year-old Eddie Kunze plopped himself down in an oversized computer chair across the desk, examining the work given to him by his mother, Chris. He pushes up his glasses on his nose, and without hesitation, flips open the search-a-word tablet. A set of yellow and green scented markers sits dutifully to his left.

"As you can see, Eddie likes search-a-word puzzles," his mother said with a smile.

Evidence enough is the ream of completed pages, marked with yellow and green. Eddie uncaps one of the markers, scooches up to the desk, and begins his focused duty of searching out words in the puzzle.

 

Eddie, circa 2009

The last time Wright County Journal-Press  shared Edward "Eddie" Kunze's story was in 2009,  when he was "way smaller" and right on the cusp of living. A lot of time has passed since then, with quite a few events rocking the Kunze family world.

When you first meet Eddie, he looks as if he's just another normal ten-year-old boy. However, Eddie isn't your typical fourth grader: he was born worth Hypoplastic Left Heart Syndrome (HLHS), and is recently a young recipient of a heart transplant.

Chris Kunze, Eddie's mom, can offer a practical explanation of this defect without even thinking twice.

"It is literally half of a functioning heart," Chris explains. "Only one side of Eddie's heart developed before he was born."

Chris had no idea that her youngest-of-five would be born with such a complex defect. HLHS affects one in 4,344 births in the U.S.,  and is pretty difficult to detect while in the womb, though it can be caught on ultrasound.

Chris stated that since she was a "veteran mom of four already," she didn't really invest much time in too many ultrasound, since she felt fine. The one she did have that she remembers most clearly is when Eddie was "doing cartwheels" as the technician was attempting to get a decent picture, and was only partially successful.

Eddie laughed at her recollection of the memory, and she smiled. "We probably could've seen his heart from the picture and been aware of what was to come, but Eddie was too much of a stinker that day."

Eddie's grin is wide every time he hears the story, and he beams up at his mother before going back to his search-a-word puzzle.

Since Eddie's diagnosis, there's been a lot of work accomplished. So far, he's seen three open- heart surgeries, and has spent countless weeks in the hospital that were "never-ending," as he put it.

"There's a lot of maintenance and repair that Eddie's heart needed, since his heart wouldn't ever fully develop," Chris commented.

 

A change of heart, literally

In January of 2017, Eddie was diagnosed with heart failure at nine-years-old. He was admitted to the University of Minnesota Masonic Children's Hospital on Jan. 9, 2017, and soon after, the process  of putting him on a transplant list for a new heart began.

"At that point, medication was keeping Eddie alive, and his heart wasn't functioning outside of IV meds and constant medical supervision," Chris said.

A lot of work goes into being placed on a transplant list, Chris would soon find out.  Thankfully she knew many other families who had gone through the same ordeal. This " heartfamily," as Chris called them, would be her and Eddie's mental and emotional support in the coming weeks and months away from home.

Eddie was put on the transplant list, and would go on to spend Jan. to Nov. in the hospital under nursing care. "I was always told he'd need a transplant, but I chose not to dwell on it until we needed to cross that bridge. I was really hard, but necessary," Chris recalls of the event.

When you ask Eddie of his time in the hospital facing a total heart transplant, he takes great care in finding the right words. "I was really shocked with the initial reveal. I didn't expect to get hit with a blast like that. It was really scary," Eddie said solemnly, sounding more like a stoic than a ten-year-old fourth grader.

Eddie was listed on the transplant list as a high-priority, class 1A patient. He was transferred from the Cardiovascular Intensive Care Unit to the sixth floor of UMMCH to establish a new routine, which he would follow all the way up to his transplant in Nov. 2017.

The hardest part was being away from family, Eddie commented. He missed his brothers, Tim, Will, and Ben, and his sister, Abbie. They came and visited sometimes, though not often, as the risk of getting sick was high.

Eddie underwent a complete heart transplant in Nov. 2017 at the University of Minnesota, after 314 days in the hospital. "I always knew this was on my radar, but I tried not to dwell on it too much, otherwise it would drive a mother crazy. I stayed with Eddie everyday, and two times a week my folks would come and stay with him and give me some time to myself. It was so difficult, but Eddie got through it like a trooper."

 

Present-day ten-year-old

Now almost five months later, Eddie is home with his Mom and his brother, Will. His two older siblings are enjoying college, and Eddie was excited to spend Easter with his family for the first time since Christmas 2016 on Sunday, April 1. He was especially looking forward to seeing his eight-month-old nephew, Owen."There's still a lot to do and keep up with," Chris stated. She doesn't skip a beat, preparing an oral syringe of medicine for Eddie.

She hands it to him, and he takes it effortlessly, giving it back to her. "Eddie will constantly, for the rest of his life, run the risk of his body rejecting his heart. He's on medications that help keep that at bay, but it's something he has to learn to cope with."

As of now, Eddie is looking forward to finishing fourth grade with his Parkside Elementary classmates, and enjoys everything related Disney Pixar. One of the highlights of his stay in the hospital was the fact he got to have a phone conversation with Dr. Pete Docter, a Pixar animator, for seventeen minutes.

Docter even sent Eddie a sketch of Woody and Buzz from "Toy Story," which Eddie is more than willing - and thrilled - to talk about.

For the Kunzes, Eddie is the youngest member of their family, and they are thankful he is still a part of their lives. What's more, they will always be especially grateful to the heart donor's family, who made the next chapter of Eddie's life possible.

He is, after all,  still the Kunze's youngest brother - regardless of what heart beats inside his chest.

 


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