Tuesday, February 9th, 2021
Colten gets his transplant
Celina boy gets life-saving liver
By Leslie Gartrell
Submitted Photo
Colten Mustard, 12, Celina, gives a thumbs-up before his liver transplant surgery on Saturday at Nationwide Children's Hospital, Columbus.
CELINA - After waiting four months on the United Network for Organ Sharing active liver transplant list, the Mustard family finally received "the call" this weekend: Colten was going to get a new liver.
His parents had been praying and anxiously awaiting the day their son would receive the organ. Colten, 12, has biliary atresia, a rare, life-threatening disease that affects one in every 10,000-15,000 children.
In a Monday interview, dad Pete Mustard said they got the call on Friday evening just as they had settled down for some pizza. Mom Amber Mustard got the call and ran downstairs to let Colten and the rest of the family know.
"It was very unexpected, and Colten didn't believe us at first," she said.
Biliary atresia causes scarring and blockage in the bile ducts, which carry bile from the liver to the gallbladder for storage and to the first part of the small intestine for digestion, according to the National Institute of Diabetes and Digestive and Kidney Diseases.
In infants with biliary atresia, bile can't flow into the intestine, causing bile to build up in the liver and damage it. The damage leads to scarring, loss of liver tissue and function and cirrhosis.
Amber Mustard said her son had undergone multiple surgeries as an infant. One of those involved the Kasai procedure, which removes damaged bile ducts and uses a loop of the infant's own small intestine to replace the damaged bile ducts, according to the NIDDK. The procedure often postpones the need for a liver transplant.
Despite the surgeries' success, Colten still suffered gradual liver damage. In May, the family took their oldest child to the hospital where he was diagnosed with hepatopulmonary syndrome, a rare lung complication from liver disease, after a weeklong stay due to a liver infection.
In September, the family met with his medical team for a two-day transplant evaluation. His doctors decided he needed to be listed on the active liver transplant list.
As they prepared to leave for Columbus on Friday, Colten got his affairs in order: he wanted to be sure the family dog would be cared for and that his parents had packed everything for his Xbox.
The transplant options included a pediatric liver, which is harder to acquire, or an adult liver, which is more accessible. He also could have received part of a liver from a deceased donor or part of a liver from a living donor, which would require them to change medical centers.
The family's No. 1 choice was to receive a whole liver, and Pete Mustard said they were blessed to receive one. The Mustards had little information on the donor but said they were immensely grateful and praying for the donor's family.
"Colten's gotten a second chance at life," his mother said.
Before the surgery, Pete Mustard said his son was cracking jokes and assured his mom that he would be fine.
"Amber was worried, and he looked at her and said 'Don't worry, I've got this,'" he said.
The family arrived at the hospital around 8 p.m. Friday, and Colten went in for surgery around 5 p.m. Saturday. By about 4:45 a.m. Sunday, the surgery was complete.
The Mustards were beyond impressed with the professionalism and level of care their son has received. Hospital staff were excited to treat Colten because he's among the few patients able to walk onto the transplant floor rather than being wheeled in, his dad said.
However, there were a few scares during the surgery. The surgery, which typically takes 6 to 8 hours took more than 11 hours.
Due to Colten's previous procedures, surgeons had to work through massive scar tissue just to remove his failing liver. Pete said that alone took doctors from 5 p.m.-midnight to complete.
"A doctor compared the scar tissue to a ball of cement" that had to be separated piece by piece, he said.
After the failing liver was removed, internal bleeding began, which doctors had to stop before they could continue. Once the bleeding was controlled, doctors were able to put in the new liver.
The 12-year-old was intubated for a while to maintain his oxygen levels due to his hepatopulmonary syndrome.
Later in the day, Colten was signaling that he wanted the breathing tube out and was extubated a couple of hours later.
Colten has done well since the surgery, his parents said. He's awake and alert, although understandably tired. He even got out of bed and sat in a recliner for a little while.
Pete Mustard said the transplant is just the beginning. Colten will probably stay in the ICU for a few days before being moved to the hospital's "liver floor" for a week. If everything goes well, he could be out of the hospital in two weeks.
Colten will stay in the Ronald McDonald House for a month before he can go home. Daily appointments and check-ins will follow for three months and gradually decrease from daily to once every three months.
He'll also have to take antirejection medication for most of his life so his body won't reject the new organ.
The whole family must make changes as well. Certain foods such as seafood will be permanently off the menu, and they'll also have sanitize the house more often.
Colten will continue to be homeschooled and also will have to be largely isolated for the next six to nine months due to his weakened immune system.
"It's like jumping into the deep end of the pool," Pete Mustard said.
However, it's still been an exciting week for the family. Two days before they got the transplant call, the Make A Wish Foundation contacted the family to let them know Colten's wish will be fulfilled.
A fan of all things YouTube, video games and technology, the 12-year-old had asked for a space where he could do homework and play video games. His dad likened it to a "man cave."
He made a list of requests, including a gaming computer and a virtual reality system and even made a drawing for officials to ponder.
The Mustards thought the charity might approve a few items. The Make A Wish Foundation, though, approved the whole list.
As Colten continues to recover, his parents gushed about the love and support they've received from the community over the past few months. The couple said they're thankful for all the hospital staff, the donor and the donor's family and the community.
"We're thankful for all the prayers," Amber Mustard said. "They've come true."
The Mustards have a long road ahead, and it is not inexpensive. While health insurance covers most of Colten's medical expenses, insurance doesn't pay for other expenses.
Travel between home and doctor's offices, lodging accommodations, unpaid time off from work and more can accrue and become incredibly costly, which is why the Mustard family has paired with the Children's Organ Transplant Association.
COTA is a 501(c)3 charity that helps families raise funds for a lifetime of transplant-related expenses. A community team of trained volunteers consisting of family and friends selected by the Mustard family have united to raise funds in honor of Colten through COTA.
COTA does not charge any fees or keep a percentage of the donations, according to Amber Mustard. Gifts to COTA are tax deductible and available to Colten for his whole life.
For more information, make a donation or follow Colten's transplant journey visit www.COTAforColten.com or the CaringforColten Facebook page.
Submitted Photo
Colten Mustard plays with LEGOs after undergoing liver transplant surgery over the weekend at Nationwide Children's Hospital, Columbus.
Submitted Photo
Colten Mustard smiles in his Celina home in this file photo from October 2020. Colten on Monday said from the hospital that he was feeling tired but good after his liver transplant surgery over the weekend.
