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Liver Transplant Recipient

Posted on July 10th, 2017 | No Comments »

Bloomington, Indiana July 10, 2017 In 2015, 580 pediatric liver transplants were performed in the United States. Monty Huesca of Kirkland, Washington, was one of them. But Monty is much more than a statistic. His need for an emergency liver transplant in July 2015 took his family completely by surprise. The fact that a liver was found within 12 days is why this energetic, Lego-loving boy is alive today almost two years later.

On June 30, 2015, Robin Huesca was engaged in her family’s normal summer routine, which included watching her two sons playing and enjoying their summer break. But Robin distinctly remembers the day when she looked at Monty, then eight years old, and noticed his eyes were uncharacteristically yellow. She called the family’s pediatrician to make sure there was no cause for alarm, but what transpired in the 24 hours after she placed that ‘just checking’ call would become a parent’s worst nightmare.

Robin clearly recalls taking Monty to the doctor, returning home after the visit and then receiving a call saying, “Go to the hospital immediately,” on July 1st. She is quick to point out Monty was a healthy and happy kid simply enjoying his summer break only 24 hours before this call. The family immediately loaded up Monty and his younger brother, Brennan, and went to the hospital with no idea what was going on. Monty was admitted and Robin and Jose (Monty’s dad) watched as a team of medical professionals started gathering, examining and running tests on their boy. Robin and Jose literally had no idea what had happened only a day previously that now had the family in a hospital setting starting to fear for Monty’s life.

The situation worsened quickly and by July 6th Monty was moved to a critical care unit. By July 7th, Monty had fallen into a coma.

Robin is an occupational therapist and is quite comfortable in a hospital setting. But those days in July 2015 turned her professional comfort level upside down as she and Jose waited to hear the cause of their son’s coma. Finally the sobering news was shared — Monty was experiencing sudden onset liver failure, which attacks one in 17 million kids. Robin and Jose credit the transplant team at Seattle Children’s Hospital with diagnosing Monty quickly so a treatment could be found.

The only treatment for Monty’s diagnosis was a liver transplant and time was running out. A liver match needed to be found very quickly. On July 12th, Monty received a life-saving liver transplant, and while his parents were incredibly grateful, they remained in a state of shock.

According to Robin, “We were having a typical summer with our eight-year-old boy who loves to play with Legos and to play video games with his little brother. Then we woke up one day to a nightmare for Monty and for our family. At this point we were just focused on survival, but we had so many friends who, like us, were in shock but wanted to do something to help.”

Soon after Monty’s transplant some of the family’s friends and Robin’s work colleagues approached them about setting up a GoFundMe account to raise money to help the family with this unexpected nightmare. Robin had just started her job a little over a year earlier and had very little paid time off available. In addition, the entire family had just experienced a terrible bout of the flu, which had used what little paid time she had.

“I told my friends that while we so appreciated the offer, the taxes associated with a GoFundMe effort really scared me. In addition I was aware of stories about charities who actually took advantage of situations like ours and I was hesitant,” Robin said. “While sitting at Monty’s bedside a social worker handed me some information that included a brochure about the Children’s Organ Transplant Association (COTA) and suggested we think about fundraising. I called the 800 number and I instantly found a sense of relief about the mounting medical bills and my unexpected, and unpaid, leave from my job.”

Robin reached out to her sister, her sister-in-law, her work colleagues at Providence Regional Medical Center and the family’s friends to ask if they would be willing to help with transplant fundraising with COTA. They agreed and a COTA fundraising specialist connected with the volunteers and Robin via conference call since the transplant had occurred so quickly and the family’s financial needs were growing exponentially every day.

COTA uniquely understands that parents who care for a child or young adult before, during and after a life-saving transplant have enough to deal with, so COTA’s model shifts the responsibility for fundraising to a community team of trained volunteers. COTA is a 501(c)3 charity so all contributions to COTA in honor of Monty are tax deductible to the fullest extent of the law, and these COTA funds are available for his lifetime.

Once the COTA in honor of Monty H website went live, the volunteers linked a Facebook effort to the home page and online contributions started to grow. Robin and Jose felt an instant sense of relief. The COTA in honor of Monty H website blog posts shared regular updates that included:

July 28th: Monty hit an important milestone on his road to recovery because he got to eat for the first time since the transplant. His first meal? Half a chicken nugget, a few bites of strawberry and some apple juice.

August 12th: One month post transplant. Through daily ups and downs Mighty Monty has lived up to his name. Monty woke up about one week after the transplant. He was still intubated but was able to smile around the tube and even danced like ‘Groot’ in his bed! … Unfortunately some complications arose after that like bumps in the road with slight rejection requiring steroids, an infection, a closed bile duct and few trips to the OR for minor procedures. Monty’s recovery will be a long process.

August 18th: Guess who came home after seven weeks in the hospital? Monty!! We still have a long road to recovery, but are so thankful to have him home and our family all together again.

September 2nd: Monty’s morning medications make my stomach hurt just watching him take them. Then we repeat a similar performance at lunch and dinner.(Upon discharge, Monty was taking 40-50 pills daily.)

September 20th: Monty’s recovery has been complicated by infection, neurotoxicity, myopathy, high blood pressure, psychosocial stress and bile duct failure. He is going to an average of 21 outpatient appointments a week, often spending 10 hours per day at the hospital.

November 15th: Tonight a beautiful group of souls came together to create an unforgettable night for COTA in honor of Monty. We were joined and supported by so many family members, friends and members of our community. I do not have the words to express how deeply thankful and honored we feel to have spent the evening in a room filled with infinite love, generosity and compassion. Thank you!

April 2nd: It has almost been nine months since Monty’s liver transplant and we are thankful every second of every day for his life-saving transplant. Monty’s recovery has been complex and continues to be a daily struggle.

May 9th: Today Monty and his little brother Brennan went on a walk and when they reached a bumpy pathway, Brennan took Monty’s hand to help him. It reminded me that even at Brennan’s young age he knows how close he came to losing his big brother and he instinctively seems to know just when Monty needs help.

Through Monty’s inpatient transplant stay and his post-transplant recovery, the Huesca family has developed a profound gratitude for COTA. “Our family’s financials got ugly during Monty’s transplant and I was not receiving a paycheck. There were days when we wondered if we would be able to keep our home and our car. Even today, Monty’s therapist is not on our insurance plan but he is very important to Monty’s recovery. COTA funds have allowed us to continue Monty’s appointments and to keep our home and possessions intact,” Robin said. “COTA’s staff members have been so accessible to us, and have been great and easy to work with. Each time I talked to someone at COTA, and continue to do so today, I can tell the staff really cares about Monty and about our whole family.”

Today, two years since Monty’s liver transplant, the Huesca family continues to settle into their ‘new’ normal. Monty will always have prescription medications to take and medical visits to attend as he continues his post-transplant journey. He dreams of one day becoming a member of the Lego Design Team because he wants to invent Legos when he grows up. The Lego Movie featured an insightful character, Emmet, who may have been speaking directly to Monty when he said in the film,You are the most talented, most interesting, most extraordinary person in the universe. You are capable of amazing things.”


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