Happy Father’s Day from the Luckiest Dad
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😊.)
Second, thanks to CHOA and the team at Sibley for everything you do. You’re the superstars. You live in a world with so much on your shoulders, yet your spirit, talent, and caring never cease to amaze.
Third, thanks to Sibley for asking me to write about Taylor, knowing ahead of time that I’m going to be a little schmaltzy. It’s great to be given a blank canvas on which to express the feelings of being a father.
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.
When we got to Egleston the medical team immediately started fluids and lab tests. Many different doctors visited Taylor, all looking for potential causes of her illness.
Friday morning, June 10, 2016, the tests continued. One test was an echocardiogram. We’ll never forget the moment the medical team, led by Bill 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.
Imagine being asked to sign many forms approving blood transfusions and other critical care, including Extracorporeal Membrane Oxygenation, or ECMO. (https://www.choa.org/medical-services/critical-care/ecmo-center.) Yes, 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. I cried for hours, blamed myself, and started to ask lots of questions. 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.
The team didn’t know the extent of Taylor’s heart illness. The only way to determine the cause and course of action would be an MRI. However, because Taylor was so sick, we had to wait several days.
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 Bill Mahle and 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!
Bill and Chad explained the steps that would be taken to make Taylor well. Luckily, we had friends waiting with us when we got this news. As someone who believes he can move mountains, and as a dad who’s smitten by his daughters, this was a time that I needed all the support possible!
Over the past 24 months, I’ve learned more about how sick Taylor was during these early days. The more I learn, the more amazed I am. During the ordeal, you would’ve never known how tough it was on Taylor. She was the rock that kept everyone going. More on this later.
The first step was to get Taylor’s body stable and ensure she was in the best health for her transplant. Her kidneys, liver and much of her body had been through so much trauma because the heart failure shut down many functions. 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!
The VADs helped Taylor get her body well. The medical team pushed Taylor to do everything she could. A better, healthy body would mean the best health for her heart transplant.
Ten days later, the medical team told us they thought they had a donor heart. Taylor was prepped and in the O.R. Then our doctor, Brian Kogon, came into the waiting room and told us the donor heart wasn’t going to work. We were crushed. But, we had complete trust in the CHOA team. We knew they were making the best decision for Taylor.
Taylor moved from CICU to Cardiac Step Down, a different wing of the cardiac unit. Her kidneys and the rest of her body continued to improve, and 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.
Taylor’s spirit and positive attitude were so important for everyone. Throughout the time in CHOA, Taylor kept people laughing and comfortable. One of the most amusing days involved Taylor and the game “Headbands.” We gathered the nurses and played the Taylor version. We didn’t have plastic bands, so we used surgical tape and a Sharpie. Taylor set the rules – all words on the headbands were to be a little “off.” The words and phrases on the makeshift headbands were so funny. The nurses, Taylor, and I were in tears laughing at each other. Taylor was being the spirited “Taylor teenager” we all loved.
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. As the day grew closer for Taylor to go home with her VADs, 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 the day we were supposed to leave the hospital, Kim got the call. There was a donor heart for Taylor, and they felt confident this was a great match. We had dual emotions on that morning, August 7, 2017. Taylor wanted to go home so badly, because she hadn’t left the hospital in two months. Then there was the anxiety of the surgery. But, as she did for every other event, Taylor buckled up her chinstrap and got ready.
Brian Kogon, and the incredible team of doctors and nurses, spent 12 hours in the operating room. The transplant went very well. Their challenge was bleeding caused by the blood thinners and the scar tissue from previous surgeries.
The transplant post-op scene was like the post-op from the VADs – many doctors and nurses calling out numbers and moving like an orchestra. It was so scary, but they stabilized Taylor and waited several days to allow the swelling to go down. They did another “exploratory” surgery to address some internal bleeding. Several days later, they closed Taylor’s chest, and she was onto 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. Team Taylor was getting Taylor ready for discharge.
There are so many more stories about the 88 days Taylor was in CHOA, but there’s one that always puts a smile on everyone’s face and sums up Taylor’s attitude.
Taylor was ready to go home. The medical team told her that she would be discharged at 2:00 p.m. And, at 2:00 p.m., Taylor was not going to wait for anyone! No nurses, doctors, or parents. No wheelchair. Taylor knew where the car was parked, and she was leaving… I still smile when I see this picture!
The CHOA/Sibley Care Group Has Truly Become Part of Our Family
There were so many people who were part of Taylor’s care. I know I’ll miss someone, so I apologize.
The Doctors – Bill Mahle, Kirk Kanter, Brian Kogon, Chad Mao, Kevin Maher, Shri Deshpande, Bob Vincent, Allen Ligon, Heather Viamonte, Shanelle Clarke.
The Nurses – many have become big sisters to Taylor. They still talk, Facebook, Instagram, and have a special relationship that’s incredible to watch. Danielle, Nikki, Racheal, Laura Lie, Pam, Stephanie, Margaret, Leslie, Vickie, Sarah, Cathy.
Transplant Team Specialists – continue to help Taylor’s grow and learn. Mallory, Faith, Annalia.
A Dad’s Point of View
The folks at Sibley asked me to talk about my experience, but it’s easy to see my focus – my daughters. Sibley asked, so I’ll provide the short version (something for those who know me… know is very difficult😊.)
I’m a curious, passionate, sometimes control freak who wants to do whatever’s possible to help people win. I’m a guy who’s not afraid to show his feelings. Yep, I cry. I also act silly and do things that hopefully put smiles on people’s faces. All of 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.” It was 2:00 a.m. By 4:00 a.m., I had selected tons of photos from my computer, sent them to Kinko’s, and created an entire collage on Taylors CICU door and in her room. It’s a great example of how I handled time in the hospital. For a person who needed to have some control, I would always look for something that I could accomplish for Taylor, the medical staff, or my family.
I wanted to know everything. I asked many questions, but understood I had to trust the medical team. They were the experts.
A guy who’s been 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 asking the medical staff about their 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.
With the struggles came lighter moments like the Headbands game. There were big milestones created by the medical team – Taylor outside for the Fourth of July, our dog coming to visit Taylor, and the many photos of the day Taylor was discharged. And, I made new friends.
One of these new friends is a 25-year heart transplant recipient, and one of Kirk Kanter’s early patients. He’s 48, married with two children, and doing great. I asked him one day, “Do you often think about being a heart transplant recipient?” He said, “Darren, I been taking pills twice a day to prevent rejection. I think about it every day, but I don’t let it be who I am.”
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 the hostess at Haven Restaurant, 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 being the super mom, keeping the plates spinning for the whole family.
Taylor is completely aware of her situation, but like my friend, 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