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 Protiva family of Omaha, Nebraska, February truly is a month to celebrate selfless gifts from the heart. Their son, Abel Falcon, is alive and able to celebrate Valentine’s Day this year because of the new heart he received nearly two years ago.
The Protiva family’s transplant journey started when Wendy was 20 weeks pregnant. Wendy remembers she and Jason were shocked when they heard the words ‘heart condition’ during a pregnancy checkup that was supposed to reveal whether they were having a girl or a boy. From that day forward their lives were changed … completely and forever.
Abel Falcon Protiva was born in January 2017 with a rare congenital heart defect called Hyploplastic Left Heart Syndrome (HLHS) in which the left side of the heart is severely underdeveloped. Without life-prolonging interventions, HLHS is fatal. But with a series of operations or a heart transplant, a child may survive. When Abel was only six days old he underwent the first of three planned open heart surgeries to help correct his heart’s defects. Unfortunately things did not go as smoothly as the surgeons had hoped during his first open heart surgery. The surgeons had to redo a part of the procedure they were not pleased with, which resulted in two more hours of surgery and having to put the baby back on bypass. The tiny infant’s chest was open for a total of seven hours.
“Home. Children’s Hospital of Omaha had become our home. It was all we knew. It took quite a bit of adjusting once we got to our house but it was our new normal. Our daily routine consisted of six medications in the morning and six in the evening. We had to monitor and record our baby’s food, oxygen saturations, weight and heart rate every day. It became second nature and we were finally starting to enjoy being at home when we were thrown another curve ball. Exactly one month after we came home, we found ourselves checking back in to the hospital because Abel was diagnosed with heart failure at his routine, one-month checkup,” said Wendy.
A test done during that appointment showed that his previously repaired tricuspid valve was leaking at an alarming rate causing his heart to work overtime. Wendy and Jason were told that Abel's feedings and weight gain would determine the next move. If he was unable get through this set back on his own, a heart transplant would be his only chance of survival.
Wendy and Jason met the transplant team, started a massive amount of paperwork and set up meetings with a variety of specialists who would play vital roles in their family’s eventual transplant journey. A transplant coordinator at Children’s Hospital of Omaha suggested Wendy and Jason consider fundraising for transplant-related expenses and introduced them to the Children’s Organ Transplant Association (COTA). Wendy did a significant amount of research and in early May called COTA’s 800 number to ask questions and learn more about how COTA might be able to help. There were many family members, friends, work colleagues and neighbors who were anxious to find something they could do to help the Protiva family, and it seemed to Wendy that COTA was the perfect way people could make a life-saving difference.
COTA is a 501(c)3 charity so all contributions to COTA in honor of Abel 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 trained the family’s volunteers and walked them through the entire process. These committed friends and family members started working to raise funds for transplant-related expenses.
“COTA was, without question, the perfect option for us. Once we became a COTA family contributions and support started rolling in,” Wendy said. “It was unbelievable and the best kind of overwhelming.”
“On the morning of May 18th around 7:15 I attended cardiac rounds outside of Abel's room just like every other morning. I expected there to be no new updates so I did not record it like I normally did. They started presenting Abel's case talking about his meds, feeds, how he did the night before … I was tired and my mind started to wander. Then our transplant coordinator spoke and caught my attention. She said Abel did in fact need an X-ray that morning and needed to go NPO (nothing by mouth). The doctor asked her why and she said, "Because he's going to the O.R." Me, still clueless, asked, ‘Why?!’ "WE HAVE A HEART," she said.
Abel’s heart transplant was tentatively scheduled for that afternoon, which turned into that evening and then into the next morning. Abel went into the operating room at 2:00 a.m. on May 19th. Wendy updated family and friends via a series of text messages:
3:38 a.m. – Dr. Hammel just came in to say he is about to get started prepping Abel for when the heart arrives. 4:01 a.m. - Heart is in the air.
4:45 a.m. - Heart has landed (at Eppley) should be here in 30 mins. Abel is doing great and things are going as planned.
5:47 a.m. - (Picture messages of the surgery and of Abel's old heart - they brought it in for Jason and I to look at in person.) Wow. Just wow.
6:06 a.m. – It is in ….and it is pink and beating … and it fits!!! Started beating on its own!
Abel was only on bypass for 106 minutes and in surgery for a little over two hours, which was absolutely incredABEL, according to Wendy. Abel came off the ventilator four days later. He immediately looked happy. He was smiling, yawning and coughing -- things he had not done in over a month.
On June 7, 2017, a COTA representative flew to Omaha to officially train a group of friends and family members who were actively fundraising for transplant-related expenses. Wendy and Jason took Abel home on June 10th -- 22 days post heart transplant.
One of the family’s biggest highlights of 2018 was meeting Abel's donor family. “We had the most wonderful time getting to know them yet, we hardly scratched the surface. We look forward to a lifelong friendship and hope to somehow thank them for the gift of life received Abel received. We were completely heartbroken to learn of the sudden loss of their daughter, Pressley, and are confident we can lessen their grief with the promise of a full life renewed. Pressley shines through Abel every day,” Wendy said.
This Valentine’s Day, Abel will be eating his favorite foods and doing his favorite things, which will undoubtedly include running, laughing and playing with baby brother, Deacon. Wendy and Jason will be remembering Abel’s heart donor angel, Pressley, with love.
For more information about the Children’s Organ Transplant Association (COTA), or to find a COTA family in your area, please email kim@cota.org.
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