67: An Open Heart

67: An Open Heart

From Chicken Soup for the Soul: Time to Thrive

An Open Heart

The most incredible thing about miracles is that they happen.

~G.K. Chesterton

I’ve been told by religious leaders, mentors and most often by my parents, that in the worst of times come your biggest blessings. This couldn’t be truer than in the case of my nephew, Cole.

At fifteen months of age, Cole was diagnosed with severe Ebstein’s anomaly, a rare heart condition where the valve between the chambers on the right side of the heart does not work properly. This results in blood leaking backward, creating an oversized right atrium and causing the right ventricle to expand as it pumps harder and harder to push blood to the lungs. Over time, the enlarged right side of the heart weakens and heart failure develops. At the time of Cole’s diagnosis, surgical interventions had been unsuccessful on other patients. The best we could hope for was that would change with time. Needless to say, my sister-in-law Shelley was devastated, as was the entire family. It seemed impossible that this outwardly thriving little boy could have a potentially fatal heart condition, and all we could do was wait.

Each year, Cole would meet with his wonderful cardiologist for an echocardiogram and, later, treadmill tests. I committed to both Cole and Shelley that I would be there for every appointment. Having worked in a hospital for years as a respiratory therapist, “medical talk” was my language and Shelley appreciated the second set of ears. The first time I saw Cole’s heart as they performed the echo, I struggled to catch my breath. I knew I couldn’t let Shelley see the shock on my face. Cole sensed my fear and reached out to touch my arm. With a big proud smile on his face, he said, “Aunt Linda, that’s MY heart.” What a blessing! I said a little prayer to myself and smiled through the rest of the exam.

Afterward I gave Cole his gift for being so brave — we went to lunch and then to a playground close to their home. For years, we repeated this scenario and Cole’s condition remained basically the same, as did the limited treatment options.

In January 2008, I met Cole and Shelley at Loma Linda University Children’s Hospital for Cole’s annual stress test, during which he quickly tired. His electrocardiogram showed his heart beginning to fail. As I pushed back the fear and panic, I stood up and encouraged Cole to keep going, knowing his cardiologist needed him to push on so she would have all the information necessary to determine Cole’s best treatment options. Finally she said, “Stop.” She explained it was time to consult with a cardiothoracic surgeon. Upon hearing this, all the color left Shelley’s face. I knew she was in complete shock. She has been such a rock for Cole throughout the years, and now it was my turn to step up for her.

In March 2008, my brother Charlie, Shelley, Cole and I met with Dr. Leonard Bailey, an internationally recognized authority on congenital heart surgery. Dr. Bailey explained that Cole’s heart was failing and he needed surgical intervention. Dr. Bailey went on to say he had been working on a procedure to rebuild the tricuspid valve and resize the right-side chambers. He seemed very confident.

When I asked when he planned to perform the surgery, his reply was “July 8th.” I was instantly relieved and took this to be a clear sign from God. That day is my favorite for many reasons — it is my baby sister’s birthday, I was told I was in remission from cancer on July 8th, and several other wonderful events and blessings have happened on that date.

Surgery was scheduled, and Dr. Bailey advised us to go on as usual. This was certainly easier said than done, at least for me. For days following the appointment, I could think of nothing else. I couldn’t focus or sleep. I cried a lot. I questioned my faith, just as I had done after first hearing about Cole’s diagnosis years earlier. Finally, an idea came to me. If I could raise enough money for Loma Linda to benefit other children with similar conditions, maybe God would look favorably on Cole and his upcoming surgery.

So the fundraising efforts began. I organized a meeting with my co-workers, friends, and family to brainstorm how to raise lots of money in only three months. The ideas and help kept coming. We had a rummage sale, a coin drive, and a recycling drive. E-mails were sent from all over the world, from friends and from friends of friends, all pledging donations and promising to keep Cole in their prayers. We hosted a silent auction and something we called a H’Art Show. Businesses throughout Southern California, including the local professional sports teams, donated hundreds of auction items, and five local artists donated their beautiful art.

We filled my business with paintings and a huge buffet while the vacant store next door was filled with silent auction items. We turned the parking lot in front into a red-carpet reception with dozens of tables and chairs and even a red carpet. Hundreds of people attended the event and most returned the following morning for our blood drive and bone marrow registry. We were able to net 118 pints of blood and thirty-two bone marrow registrants.

Newspapers throughout Southern California came to interview Cole and wrote wonderful articles that netted additional donations for the hospital. All in all, we raised more than $27,000 in less than three months. Everyone rallied around this amazing eleven-year-old, flooding him with love and support as he went into surgery.

On Tuesday, July 8, 2008, Cole was to be the first surgery of the day. By noon, surgery hadn’t begun and we were all anxious, wondering if he would have surgery that day at all. But, at approximately 1:00 p.m., he was taken back to the operating room and our family gathered in the main lobby to wait. We were given a small pager that would keep us updated as surgery progressed. We were told he had been intubated and was being “cooled,” which freaked out Shelley, but I reassured her that was normal procedure and everything was at it should be.

The next page freaked me out: “We’ve started the procedure.” All I could picture was my precious nephew’s chest spread wide open. I got up and ran for the front doors, Shelley calling behind me, “Where are you going?” I quickly replied, “To get some fresh air. I’ll be right outside.” As I opened the doors, I was hit with 103 degrees of stifling hot air. I walked around to the side of the hospital, fell onto the grass under a shady tree and sobbed. At that moment, I realized I could have raised hundreds of thousands of dollars for the hospital and it wouldn’t have been enough; it was all completely out of my control! I prayed and gave it all up to God, asking for strength to go back in and be there for Shelley and my family, whatever the outcome. After several minutes, I went back in. In an attempt to keep things light, I tried making small talk. I rubbed my very pregnant niece’s feet, fetched beverages from the cafeteria, and paced.

At about the five-and-a-half-hour mark, we received a page to go to the fifth floor waiting room. Surgery was over. We all bolted for the elevators, my two brothers practically carrying my father, who walks slowly with a cane. The twelve of us piled into one elevator and my thoughts were spinning. How could surgery be over so soon? Dr. Bailey had estimated surgery would take close to seven hours; had something gone wrong? When we reached the fifth floor, Charlie, Shelley and I were escorted to a small waiting room just around the corner from the unit while the remainder of the family went to a large waiting room down the hallway.

About five minutes later, Dr. Bailey came in with a huge grin and said, “It went perfectly.” I didn’t comprehend or maybe believe what he had said and asked, “What do you mean? Did you have to put in a valve? Is he on an external pump? Is he okay? Will he need another surgery?” Again Dr. Bailey said, “It went perfectly. We didn’t use a valve. I don’t know if he’ll ever need another surgery. He’s okay and you can go see him in a couple of minutes. He’s fine.” Shelley screamed, Charlie jumped up and hugged Dr. Bailey, lifting his feet off the ground. All the while I was frozen to my chair, trying to take it all in. It was a miracle!

The rest of the family came running up the hallway after hearing Shelley scream. Finally, I got up and shouted, “He’s OKAY! It went PERFECTLY!” My family, all crying happy tears, took turns hugging Dr. Bailey as I leaned against the wall, looking at the picture hanging just outside the small waiting room. I must have seen it before, but never really saw it. It was a surgical team performing surgery on a child with a silhouette behind the surgeon — God’s hand on the hand of the surgeon, performing a miracle.

Today, Cole is eighteen years old. He graduated from high school this year and is a thriving, healthy, strong, six-foot-two young man with his whole life ahead of him.

~Linda M. Johnson

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