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Heart Dad inspired by transplant recipient daughter

I’m a smitten father of two extraordinary daughters, one of whom is a true medical miracle

First, I want to say Happy Father’s Day to all dads. Hearing our children call us “dad, daddy, papa,” or whatever name, is one of the greatest gifts we’re given. It’s often said but cannot be said enough… regardless of our world, our children’s comments and hugs quickly change the day (even when they’re teenagers with attitudes.)

I have the greatest Father’s Day gift – two amazing daughters who are each, in their own unique ways, my heroes.

Emerson, 12, is my hummingbird, who throughout the entire ordeal with Taylor, stayed positive and brightened everyone’s day. Taylor’s story is a miracle, and the reason Sibley asked me to tell you about our experience. Taylor, 16, is a heart transplant recipient. She’s a walking miracle and proof that positive spirit, fight, and a great community of friends and medical superstars can make almost anything happen!

Now to the story…

It’s been two years, but the feelings often come rushing back. Talking with new-found friends who’ve been through this experience, they say, “it just takes time.” Time — and seeing great things happen with Taylor every day — changes this story from difficult to inspirational.

Thursday, June 9, 2016, Taylor went to the Scottish Rite ER for fluids. Taylor was sick for two weeks, so our pediatrician wanted to ensure Taylor was okay before we went on vacation. What transpired over the next 24 hours, and then the next 88 days, is still difficult to comprehend.

After hours of tests, the ER doctor pulled me aside and said, “You need to change your plans.” Being naïve, my response was, “Can we travel Saturday? Sunday?” To which the doctor said, “No… you need to change your plans. Taylor has kidney failure, and we’re immediately sending you to Egleston.” An hour later we were in a CHOA transport heading to Egleston.

Friday morning, June 10, 2016, Taylor’s tests continued. One test was an echocardiogram. We’ll never forget the moment the medical team, led by Dr. William Mahle, circled around the echo monitor. They found the cause of Taylor’s kidney failure. Her heart was very sick and wasn’t pumping enough blood to support her system.

We had to approve blood transfusions and other critical care, including Extracorporeal Membrane Oxygenation, or ECMO. We were being asked to allow immediate use of a critical life support system for Taylor. The fear and emotion was something we’ll never forget. Thanks to the medical team, and to a close friend, we made it through the immediate panic. What’s still amazing, Taylor handled the news the same way she handled the ordeal – with her huge “Taylor’s spirit” and grace.

Rolling Taylor into the MRI is a moment I’ll never forget. It still makes me cry. Taylor said, “Daddy, just tell me that my heart is sick and that’s it.” I remember telling Taylor, “I promise. It’s just sick. All’s going to be okay.” In our household, a promise was (is) like law.

So much for making a promise about things I didn’t understand… when we met with Dr. Mahle and Dr. Chad Mao to discuss the MRI results, we got another tough, emotional blow. They told us that Taylor’s heart was very damaged from the virus, but they knew how to fix her. Taylor would need a heart transplant. A “HEART TRANSPLANT!” It’s taken me a long time to use the words “heart transplant” in combination with Taylor. Now, it’s like seeing a giant “S” – superwoman – on Taylor’s chest!

The first step was to get Taylor’s body stable. Her kidneys, liver and much of her body had been through so much trauma because the heart failure shut down many functions. Dr. Kirk Kanter, the incredible doctor who’s led pediatric transplant at CHOA for over 20 years, performed the first surgery. Taylor was to have an L-VAD. It would assist her heart with its normal functions. As it turned out, Taylor needed and L-VAD and R-VAD. Taylor was only the tenth patient to have this bi-VAD procedure.

Post-op was difficult to watch! Taylor’s room was filled with ten doctors and nurses calling numbers and addressing every possible need. Two more surgeries were needed to address internal bleeding. Taylor did great, and she fought through every part of the tough times. She had the “Taylor spirit” that kept the nurses laughing and amazed. At one point, Taylor tried to sing while she was intubated. Truly unbelievable!

After a false alarm with a donor heart, Taylor moved to Cardiac Step Down. She gained more strength each day. Doctors, nurses, PT, and counselors were all part of the Taylor family. They did amazing things, helping Taylor and our family make it through many trying days and nights.

Throughout the time at CHOA, Taylor never wavered. She knew she was going to be okay. Emerson knew it as well. I’ll always remember another moment when I asked Emerson to reassure me that Taylor would be okay. Emerson said, “Yes, she will,” and all was better in the world that day.
One of the hardest things was Taylor’s desire to go home. “Daddy, I just want to go home.” These words were so tough. I couldn’t do anything. Kim and I learned all about the VAD functionality, maintenance, and procedures. We were ready to go home and wait for the next call about a donor heart.

On August 7, 2017, we were supposed to leave the hospital, and Kim got the call. There was a donor heart for Taylor. Taylor wanted to go home so badly, because she hadn’t left the hospital in two months, and there was anxiety of the surgery. But, Taylor buckled her chinstrap and got ready.

After 12 hours in the operating room, the incredible medical team moved Taylor to post-op, where the scene was scary. Doctors and nurses called numbers and moved like an orchestra. They stabilized Taylor and waited several days to allow the swelling to go down, then closed Taylor’s chest. She was on her way to recovery.

Taylor moved to Cardiac Step Down and started her recovery. The support and encouragement from the medical team was fantastic. Taylor fed off their enthusiasm, and they fed off Taylor’s spirit. And finally, 88 days later, Team Taylor was ready for discharge.

A dad’s point of view…

I’m a guy who’s not afraid to cry and can act silly so I embarrass my daughters. This helped me get through the time in the hospital and continue to help me every day.

Being in the hospital was a daunting ordeal. I was petrified at times. The medical team would tell me, “Think about small wins. Expect a roller coaster. Go home.” I ignored the last suggestion! I often wandered the halls or just hung out in Taylor’s room during night shift.

One night, our CICU nurse said “Darren, you’re always showing pictures of Taylor. You should decorate her room with photos.” By 4:00am Taylors CICU door and in her room were decorated with photos. It’s a great example of how I handled time in the hospital.

As a person who’s spiritual, but not religious, I found myself talking to whatever higher power would listen. I prayed, many times, many ways. I breathed in the sun and whatever positive energy I could, then touched Taylor, hoping this energy would help her.

I spent time learning about the medical staff’s families, bringing pizzas, and doing anything I could to feel some semblance of control and normalcy. And, I fought every day to be the rock that a dad is supposed to be. Holy cow was it tough.

Where are we now…

Two years later, Emerson is still my hummingbird. She’s a strong, vibrant little girl who looks up to her big sister every day (just don’t tell Emerson we all know). Taylor’s a 16-year-old high school junior at Holy Innocents’. She’s back in the theatre world, something that was a huge part of her life prior to getting sick. She started her first job as a hostess, and she just did her first 5k with some of the CHOA medical team. Taylor deals with normal mother-daughter “banter,” boys, and grades. She’s going through all the normal teenage craziness. And Kim… Kim’s the super mom, keeping the plates spinning for the whole family.

Taylor is completely aware of her situation, but her heart transplant doesn’t define her. Taylor gets embarrassed when I talk about her. However, as I mentioned as the beginning of this little journey, I’m a smitten father of two extraordinary daughters, one of whom is a true medical miracle.

Happy Father’s Day

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