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February 1st, 2020 — February is the month to celebrate love and hearts. Since 1964 February has been known as American Heart Month throughout the United States. For the Buskirk family of Las Vegas, Nevada, February truly is a month to celebrate selfless gifts from the heart. Their toddler, Emerson, is alive and able to celebrate Valentine’s Day this year because of the new heart she received just over a year ago.
Emerson Lee Buskirk was born in June 2018 to ecstatic first-time parents, Andrea and Brandon. They were thrilled and thankful to welcome this precious infant to their now family of three. Their first few months at home in Las Vegas with Baby Emerson were like those of other first-time, adoring parents. According to Andrea and Brandon, Emerson was the world’s easiest baby and they knew how fortunate they were. She was a champion sleeper and eater. She was very calm yet very curious. But early in the morning of September 24th, they embarked on a new and unexpected journey with Emerson.
Andrea and Brandon both blogged and posted on social media regularly about Emerson’s transplant journey and what follows are excerpts from their narratives:
Brandon and I are both teachers, so when the school year started for Brandon, we knew it was inevitable he would bring home germs. In early September he had a cold that was eventually passed to Emerson. We did not know it at the time, but that virus was the tipping point for her body. In mid-September 2018 we noticed something was ‘off’ with Emerson. She was not sleeping as well as normal, and was a little more cranky than usual. We decided Brandon would stay home with her on September 24th because that was to be my first day back from maternity leave for my teaching job. However, I was not able to return to my classroom as planned.
That night Emerson’s whole demeanor changed and she was lethargic. We assumed she just was not feeling well because of her cold. At 3:30 a.m. we were awake with Emerson. She was refusing to eat and her wet diaper was very dark, signaling dehydration. We grabbed her diaper bag and left quickly for the local hospital’s emergency room. Upon intake, an IV was started and she was immediately put on oxygen. She was very pale and was having trouble breathing. A chest x-ray was performed and then a doctor came in with news we had not expected to hear — Emerson was in congestive heart failure. Our world stopped.
We were immediately transferred to Sunrise Children’s Hospital in Las Vegas to meet with pediatric cardiologists. The cardiologist who performed Emerson’s first echocardiogram left the room saying, ‘I need to expedite this’ and then returned very quickly to tell us what he had seen. He knew Emerson would need a pediatric heart transplant to survive. We were briefly admitted to the PICU and plans were being made to transfer us to a pediatric heart center. Loma Linda University’s Children’s Hospital had an opening on the cardiac floor, and less than 12 hours later we were being life-flighted there … about 250 miles from our home.
The first week of Emerson’s Dilated Cardiomyopathy diagnosis was grim. By the time she had another echocardiogram performed on September 25th, her heart function had gone from 30% to 9%. Her body was failing. Loma Linda’s team of pediatric cardiac specialists thought she would need to be placed on Extracorporeal Membrane Oxygenation (ECMO), which is highly specialized life support. She was sedated, intubated and placed in isolation. The only way we could see her was to put on a gown, mask and gloves. We could not hold or comfort her. We felt lost and far away from our support network. Emerson was officially listed as transplant status 1A on September 26th. Our pastors travelled from Las Vegas to California and we baptized Emerson in the hospital, which was not at all what we had planned. We were preparing for the worst.
The next step was to get Emerson off the ventilator, which could only be done if her heart function got better. On October 8th her first open heart surgery, the Pulmonary Artery Band, was performed. This procedure is so new in the world of Dilated Cardiomyopathy treatment that less than 100 had been performed worldwide. Emerson was the fourth Loma Linda patient to have this procedure. This banding allowed her to come off the breathing tube and start eating again. Her heart function improved to about 20%. With these successes, Emerson was moved from 1A status to 1B since she was no longer quite as critical. Then the waiting began.
A close friend of the family reached out to the Children’s Organ Transplant Association (COTA) to learn more about the organization and about fundraising for transplant-related expenses. Andrea and Brandon then spoke to their Loma Linda transplant social worker to learn more. On October 15, 2018, the Buskirks officially became part of the COTA Family.
COTA is a 501(c)3 charity so all contributions to COTA in honor of Emerson are tax deductible to the fullest extent of the law, and COTA funds are available for a lifetime of transplant-related expenses. COTA uniquely understands that parents who care for a child or young adult before, during and after a transplant have enough to deal with, so COTA’s model shifts the responsibility for fundraising to a community team of trained volunteers. A COTA fundraising specialist travelled to Loma Linda on November 3rd to train the family’s volunteers and walk them through the entire process. This group of family members and friends returned to Las Vegas and quickly got to work organizing fundraisers to help with mounting transplant-related expenses.
The months following the Pulmonary Artery Band surgery allowed Emerson’s body to regain strength, allowed her to grow, allowed her to gain weight and allowed her to completely breathe on room air. From what our nurses told us, Emerson was a rare case. When babies need heart transplants, they usually do not look like her. From her appearance alone you never would have known she was so sick. She would light up the hospital room with her gigantic smile and truly loved all the attention she received. She was known as the ‘mood booster’ of the pediatric cardiology floor at Loma Linda. In January our cardiologist wrote to UNOS (the United Network of Organ Sharing) to petition Emerson to go back to 1A status since a pediatric heart transplant was her only chance at long-term survival.
We received our life-changing call that a heart was available on January 17, 2019, at 5:46 pm. Emerson was taken to surgery at midnight, and was brought back up at 6:30 am on January 18th. She was extubated right after the transplant. With her now healthy heart, she almost instantly ‘pinked up’ like other babies. Her numbers stabilized. Miraculously she was discharged nine days after her heart transplant.
On February 14, Valentine’s Day, 2019, Andrea posted the following update:
Valentine’s Day has a whole new meaning for us this year, because February 14th is also National Donor Day. Today we are especially thankful for our donor family who gave Emerson a second chance at life. Without families like theirs, our little girl would not be here. They truly gave us a priceless gift. Today I want to bring awareness to the thousands of children and adults who are waiting for a life-saving transplant. I urge you to prayerfully consider becoming an organ donor. Did you know one person alone can save eight people with his/her organs? Emerson required blood transfusions many times throughout her hospital stay. Donating blood is another great way to honor our little girl. Lastly, if you feel so inclined, Emerson was transplanted at six months old. If everyone gave just $6 to COTA for Team Emerson, medications can be provided for Emerson for many, many years to come. The outpouring of love and support we have witnessed over the past months is incredible — it has allowed us to focus on Emerson’s needs and care … and not on the financial stresses of life. Thank you from the bottom of our hearts.
Emerson and Andrea remained in Loma Linda until early April and regularly went to nearby clinic appointments to make sure she was doing well. (Brandon had been teaching during the week in Las Vegas and travelling to California on the weekends for several months, which is a transplant-related expense for which COTA funds can be utilized.) They were all able to return home to Las Vegas on April 1, 2019, to resume life as a family of three.
Today Emerson is thriving and is as curious as ever. Andrea and Brandon are elated to have her home and to watch her grow and develop. She continues to love life. Her personality is blossoming with every beat of her amazing new heart. Emerson loves to smile and make funny faces. She loves her kitties, any and all toys that make music and her large collection of stuffed animals.
The COTA fundraising effort in Emerson’s honor has been very successful, which has continued to alleviate many of this young family’s stressors.
According to Brandon, “When we first learned about COTA, it was a relief to see other families who were also in our situation. Through COTA we discovered there is an entire community of transplant families who know exactly what we face each and every day. The COTA.org home page provided us tremendous hope because we could read success stories about other COTA heart kids. COTA has allowed us to focus on our family first and not on worrying about how to pay for the resources Emerson needs today … and into the future.”
On Emerson’s first birthday in June, Andrea wrote her this note:
My Dearest Emerson,
Today you turn one year old. A birthday we did not know we would ever be able to celebrate with you. The challenges and odds you have had to overcome in your first year of life are greater than most people experience in a lifetime. You have overcome Intubation … Being paralyzed … Two open heart surgeries … A heart transplant … Surgery to drain fluid on your heart … Numerous IVs … Countless blood draws … Numerous blood transfusions … Countless heart tests, CTs and MRIs … Withdrawal from narcotics … A collapsed lung … Doctors saying you might not survive … and so much more. Being your mom and watching you overcome such adversity has been a challenge. They always say having kids teaches you so much. That is an understatement with you. You have taught me how to fight … how to be brave … and how to overcome. Your ‘fighter’ spirit is something I pray lives inside of you forever.
“Emerson becoming a Children’s Organ Transplant Association (COTA) kid continues to be a huge blessing for us. Our world turned upside down after her birth, and we had to move to another state for her care and eventual transplant. COTA provided us comfort regarding the mounting medical bills for our lengthy stay. Now that we are back home, we know Emerson will get the best care possible and continue her recovery without the two of us worrying about the medical bills. It is so reassuring to know that when Emerson inevitably needs another heart transplant, COTA will be there at that point and … for a lifetime,” said Andrea and Brandon.
Emerson has not slowed down in any way since her heart transplant. She has shown her Warrior Spirit and has proven she can weather any storm. People comment to Brandon and Andrea f
requently that had they not followed her journey or known anything about her health challenges, you would never know what she has been through.
According to Andrea, Emerson is running through life (literally) and shows no signs of slowing down. She is a bundle of energy from the moment her eyes open in the morning. She loves taking her new puppy, Weston, on walks and playing fetch with him. She loves reading books, being chased around the house while letting out full squeals of excitement and dancing to any music she hears (especially if it is Moana!). Emerson is living her life with no abandon.
“While Brandon returned to work in the fall, I stayed home to make sure all of her appointments were always taken care of. We are seeing a delay in eating due to her time in the hospital and are currently working to find the right feeding therapist to help us address these needs,” Andrea said. “We find total comfort knowing COTA funds can be used towards this. That knowledge takes away the financial stress of paying for her necessary therapy and the medications she needs.”
This Valentine’s Day, Emerson will likely be eating her favorite foods and doing her favorite things, which will undoubtedly include dancing, laughing, reading making funny faces and simply being adorable. Andrea and Brandon will be remembering Emerson’s heart donor angel with love.
Happy Valentine’s Day Buskirk Family from your COTA Family!
