- Associated Press - Saturday, December 5, 2015

PITTSBURGH (AP) - Lucas Goeller is a celebrity in these hallways.

He’s king of the corridors in a three-wheeled bicycle stroller, manned by his dad, Rick, as they explore the nooks and crannies of Children’s Hospital of Pittsburgh in Lawrenceville.

Doctors, nurses, desk workers and patients alike call out the 2-year-old liver transplant patient’s name.

“Hey, Lucas - hi, honey,” Dr. Marian Michaels, an infectious disease specialist, says as she passes. “Wow, he looks great.”

It’s Nov. 9 and a big day for Lucas: Dr. Kyle Soltys, a transplant surgeon, is removing an ostomy bag from Lucas’ abdomen. Doctors anticipate the bag that drained fluid from his new liver no longer is needed.

“A big step toward more normal,” explains his mother, Jessica Goeller.

For the Goellers, normal is forever redefined. Weekly hospital visits to test Lucas’ blood and liver functions are part of life for the near future. There’s a kitchen cabinet full of pills - steroids, anti-rejection drugs, vitamins, digestive aids and antibiotics. Lucas’ medical demands soak up precious time needed to raise two other boys, Cooper, 4, and Jacob, 7 months.

The Goellers gratefully accept that notion.

Once jaundiced, frail and sickly, Lucas received a lifesaving liver July 1 from a 3-year-old Nebraska girl, Olivia Swedberg, who had died of brain cancer a day earlier. He waited for 18 months for a match, and doctors didn’t think he would survive much longer.

“My goodness, that boy was looking for a liver for so long, it was worth a shot,” the donor’s mother, Lauressa Swedberg, told the Tribune-Review. “I wanted to make it work for that family. They seemed so wholesome.”

Lucas’ recovery has been far from seamless.

A ventilator helped him breathe for 10 days after the transplant. He battled organ rejection and a high fever. The main artery into his liver became blocked. That caused damage to the new liver. Doctors wondered whether his donor’s different blood type increased the chances of rejection.

“Those were really tough times,” Jessica Goeller said. “It seemed like one infection after the next.”

High doses of steroids and other anti-rejection medications and treatments helped him pull through, and Lucas returned home in mid-August. His family couldn’t give a him a full bath because of his huge T-shaped incision and ostomy bag.

The Goeller family allowed the Trib to document Lucas’ recovery, beginning two months ago with hospital visits.

“Considering that he is still just over four months from transplant, and how ill he was, we are really encouraged with his progress,” said Dr. George Mazariegos, chief of pediatric transplantation. “His liver function is essentially normal.”

The liver was rock hard and coal black and oozed of disease.

“It sounded just like this,” Jessica Goeller recalled as she knocked her fist against her picnic table. “I never heard an organ clang off a table before.”

Doctors told them that scarring was so severe that blood could not flow through the liver. Lucas’ body compensated for the lack of blood flow through the liver by creating large vessels around it, which became overworked.

The Goellers asked to see the liver because “we wanted to see the demon that was plaguing our son for the prior two years,” Jessica Goeller said. “The pathologist told me it was the ugliest, sickest-looking liver he had ever seen.”

Rick Goeller said it resembled a charred piece of steak.

“I’ll never forget holding that liver,” he said. “It was pretty hideous.”

Lucas was 3 months old when doctors diagnosed him with a disease called biliary atresia. His bile ducts were inflamed. Bile built up and slowly began to destroy his liver. To have a shot at living, he would need a liver from a deceased infant, child or young adult.

Desperate for a donor, the Goellers initiated a public campaign, including 25 billboards donated by Lamar Advertising and Facebook posts that caught Swedberg’s attention. When she saw Lucas’ photos, Swedberg knew her terminally ill daughter could live on in him.

“I fell in love with Lucas the minute I saw his picture,” she said. “Right away, I contacted Jessica through Facebook, and asked, ‘What do you know about direct donation?’ “

Organ procurement rules permit people to make a direct donation and designate a specific person to receive the organs. When Olivia died on June 30 in Nebraska, a transplant team rushed her liver to Pittsburgh.

Jessica Goeller had driven to Cincinnati to explore registering Lucas on a donor list. Rick Goeller was en route to Cincinnati to join his family after flight training in Denver. He called his wife to check in during a layover in Chicago.

“Almost immediately after we hung up, I got a call from Children’s in Pittsburgh,” Jessica Goeller recalled. “They told me, ‘We have good news. The liver is a go, and you can come home now.’ “

“Daddy,” the tow-headed toddler says as Dr. Soltys removes Lucas’ drainage bag.

Lucas cries.

“I want Daddy,” he says.

“I’m right here buddy,” Rick Goeller reassures him. “I’m not going anywhere. Lukey, hey, hey, it’s OK.”

“Nothing to it, buddy,” Soltys exclaims. “You’re all done.”

Calming in his dad’s arms, Lucas looks up and utters a favorite phrase: I love you. He pronounces it, “I wub you.”

Soon the Goellers are on their way home to Indiana Township, leaving behind the Lawrenceville hospital where Lucas spent seven weeks.

The transition comes with risks. Lucas takes anti-rejection drugs that suppress his weak immune system. Any kind of cold or flu virus could send his health into a tailspin.

“A lot of people want to run up to him and touch him when they see him,” Jessica Goeller said. “I know they mean well, but I try to keep a 5-foot barrier around him.”

Lucas is an active and chatty toddler with a healthy appetite for scrambled eggs, Mom’s homemade bread, rice, pumpkin muffins and chocolate milk.

He playfully scraps with Cooper and marvels over the growth of their younger brother. He cackles when he pedals his plastic big wheel around the family’s backyard, and he revels in grass-cutting tractor rides with his mom or dad.

Lucas continues to grow into the liver. Because the organ came from an older donor, his abdomen looks swollen. It was a tight fit, but that should fade over time, Mazariegos said.

A puffy belly is a minor concern for the Goellers, who juggle doctor appointments and keep track of Lucas’ medications by checking a list taped to their refrigerator.

On top of that, Rick Goeller, a pilot for United Airlines, flies on an as-needed basis. He drops everything and goes when the airline calls with work.

The Goellers graduated from Fox Chapel Area High School a year apart. They knew each other then but started dating after a chance post-college encounter at a gym. They wed in 2008.

“I like to say we’re a tag team,” Jessica Goeller said. “It’s been a long journey. We didn’t just one day have this sense of calm. We’re still learning.”

Jessica Goeller had a daily vision when Lucas reached his sickest point.

“I used to look out the living room window and imagine him running around the garden, chasing after Cooper,” she said. “I could see it, clear as day.”

Faith and prayer play large roles in the Goeller household. Jessica, 33, and Rick, 35, come from devout Catholic families and belong to St. Mary of the Assumption Parish in Glenshaw.

Faith carried them through trying times, though Rick Goeller admits doubt crept in.

“When Lucas was sick, he couldn’t really express himself by physically doing things,” he said. “He was stationary on the couch a lot of time. Now he’s walking around between here and there, riding the tractor, instigating fights with Cooper. These are all things he was probably thinking about doing but now can actually put some rubber to the road, so to speak.

“I never really thought we would get a chance to see this side of him.”

On a recent sunny day, Rick took a break from laying gravel in the driveway and watched as his wife drove the family tractor on their acre lot. Lucas sat on her lap, first laughing and then intently staring.

He had dozed off by the end of the ride.

“Just to see this,” he paused, and his eyes moistened as he pointed toward his wife and son, nodding his head in acknowledgment. “He’s an entirely different little man now.”

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Online:

http://bit.ly/1MYjGdE

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Information from: Pittsburgh Tribune-Review, http://pghtrib.com

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