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The Heart of the Matter: Highs, lows mark path of progress

Faith and love steer family as boy recovers from transplant

By Carolyne Park

This article was published August 10, 2010 at 5:46 a.m.

in-the-months-since-christopher-schroeders-heart-transplant-he-has-struggled-with-kidney-trouble-that-has-led-to-complications-and-his-being-placed-on-dialysis

In the months since Christopher Schroeder’s heart transplant, he has struggled with kidney trouble that has led to complications and his being placed on dialysis.

Last in a series

— Five days after his Jan. 16 heart transplant, Christopher Schroeder was puffy and swollen. His chest was covered with a dark bruise.

A towel on his head covered a sensor that monitored oxygen to his brain, and various tubes controlled fluids to and from his tiny body.

While the 9 1/2-hour surgery gave Christopher a new chance at life by replacing his malformed heart, a long road to recovery lay ahead. Christopher’s health continued to fluctuate for months, and doctors watched him closely.

He battled infections, changes in his blood pressure and other complications. But most challenging were his kidneys.

His kidneys had shown only sporadic signs of function since the surgery. Unless they began working again, doctors said, Christopher would need a new kidney when he was old enough to undergo another transplant.

Doctors tackled each new problem as it came, and the family worked to stay strong, emboldened by unwavering faith and love.

Christopher’s father, Little Rock native George Schroeder, said it was like being on an emotional roller coaster. But the family pushed forward, knowing the transplant gave Christopher a new chance at life.

“Now there’s progress to be made,” George said. “ I’m optimistic because he has a new heart. Where he didn’t have the opportunity to get better before, now he does.”

Shannon Schroeder spent long days in Room 12 of the cardiovascular intensive care unit at Arkansas Children’s Hospital watching over her son. She read to him, stroked his skin and sang a lullaby she made up just for him: “Momma loves her little baby boy. Sweetest little Christopher. Sweetest baby boy.”

Days turned into weeks, and weeks turned into months. The starkness of winter gave way to the dogwood blooms of spring, and spring faded into the heat of summer.

Doctors, nurses and other medical staff advised her to have patience and not expect too much. Progress came in baby steps.

“If he takes a little step back, it’s better than taking a big step back,” Shannon said.

“Even a day of stability is a good day for us.”

‘TIGHTROPE’

Dr. Robert Jaquiss, Children’s Hospital chief of pediatric and congenital cardiothoracic surgery, led Christopher’s transplant surgery. He said the perils are highest for transplant patients the first few months after surgery.

The biggest risks are infection and the body’s immune system rejecting the new organ.

Doctors play a balancing act Jaquiss likened to “walking a tightrope.” A patient takes drugs to suppress his immune system and prevent it from attacking the new organ, but the drugs also leave him at greater risk of infection.

Other medications have some negative side effects. For example, one of Christopher’s immune suppressants inhibits kidney function, Jaquiss said.

Christopher’s kidney problems began within a couple of days of his transplant. He was placed on peritoneal dialysis.

“Because his kidneys aren’t working, they’re just gently putting fluid in and pulling fluid out,” Shannon said.

For weeks after the surgery, two nurses stayed in Christopher’s room watching him 24 hours a day.

Seven days after the transplant, he developed a lung infection. Doctors treated it with antibiotics.

Eight days after the transplant, he was taken off the pacemaker that had regulated his heartbeat since the surgery.

Then, in late January, the family had a scare when the valve separating the two left chambers of Christopher’s new heart began to leak. Doctors thought it was likely due to severe swelling. They couldn’t operate on such a young and newly transplanted heart, so it became a waiting game.

WATCHING AND WAITING

The swelling decreased and the leaking eventually stopped, but by mid-February Christopher’s kidneys hadn’t improved. Doctors took him off one of the immune suppressants in hopes it would kick-start his kidney function. But it didn’t work.

They began talking with the Schroeders about sending him home on dialysis. They said Christopher would need a kidney transplant between ages 2 and 4.

Though he was dismayed that Christopher would need another transplant, George said he’d be his son’s next organ donor if he could.

“I’d be proud to give him a kidney,” he said.

By early March, Christopher was swelling again.

Fluid began leaking from the dialysis catheter site, and he fought through a stomach infection.

On March 19, doctors put him on a different machine that pulls blood out of the body and removes fluid waste before returning it to his system. The process seemed to be working, and his swelling went down significantly.

A handwritten sign on the glass door to his hospital room read “The Amazing Shrinking Christopher.”

But later that month, his liver function inexplicably slowed, causing his skin to yellow with jaundice and raising concerns of serious complications. Alarmed, medical staff performed several tests but couldn’t find a cause. Again, it became a waiting game.

SIGNS OF IMPROVEMENT

Along with the many lows, there were also highs.

Christopher’s new heart continued to beat true and strong. Tests Feb. 18 and May 21 showed no signs that his body was rejecting the heart.

His liver function gradually improved, and his skin returned to a healthy pink hue.

On Feb. 26, Shannon was allowed to hold Christopher for a couple of hours for the first time in 2 1 /2 months. A month later, she held him again.

“I got to hold him for four hours,” Shannon said. “It was sweet. He just snuggled in and slept.”

Then, at 1:35 p.m. April 2, doctors took Christopher off the ventilator that had helped him breathe for so many months. It was a risky change, and doctors and nurses watched him closely to see how he would do - whether his lungs would struggle or tire quickly.

“We’re praying he’s going to be OK,” Shannon said at the time.

As it turned out, Christopher was ready to breathe on his own.

“He’s been content,” Shannon said later that day. “I’ve just been rubbing his head, and he’s been real content. We’re hoping this is going to be a step to him being a healthy baby boy.”

Two days later, visiting from the family’s home in Oregon, George held him for the first time in four months and later heard him let out his first squeaky laugh.

Registered nurse Kathy Woodward said it would take Christopher time to gain his full voice after being ventilated for so long.

“He looks like a different baby than he did a month ago,” Woodward said. “He’s made good progress.”

A FAMILY’S LOVE

On an April 2 hospital visit, 10-year-old Elizabeth Schroeder and her 9-year old brother, George, looked inquisitively at their baby brother as he lay in his bed.It was only the second time the siblings had seen Christopher, then 4 months old.

“Hi Christopher, I’m your big brother,” George said as Christopher looked up at them with wide eyes.

They visited with their baby brother for about an hour, reading to him and turning to ask their parents questions about the tubes and machines he was hooked up to. At one point, Elizabeth turned to her mother and asked, “Does he not like it here?”

“He doesn’t know anything different, baby,” Shannon said.

About a week before Christopher’s transplant, the Schroeders had moved into a house on Kavanaugh Boulevard, owned by Pulaski Heights Baptist Church, that church members offer to families in hard times.

Shannon said the move was a huge blessing. It put her much closer to Christopher than the 45-minute commute she was making from her husband’s parents’ house west of the city.

“It’s literally five minutes from the hospital,” she said.

Elizabeth and young George have their own bedrooms full of toys from home.

They proudly show off a teddy bear they and their cousins made at Build-A Bear Workshop especially for Christopher, waiting for when he comes home. It has a red and white heart patch over its chest that beats when squeezed and has small hearts stuffed inside.

“Everybody put a heart in him so he has nine hearts,” Elizabeth said.

Shannon and the elder George said the last several months have been hard, especially because George hasto spend most of his time back in Oregon working to pay the bills.

While Shannon’s at the hospital, young George and Elizabeth - who are homeschooled - have stayed mostly with relatives, including their aunt Lori Harris and her family in Maumelle, their grandparents here and their other grandparents in Gulfport, Miss.

Shannon said she wakes up tired.

“The physical strain catches up at some point,” she said. “Over time, you just don’t realize the toll.”

LOOKING TO A FUTURE

By mid-April, Shannon could hold Christopher daily, but a month later he suffered another scary setback. He developed a hernia, and the once smiling, cheerful baby couldn’t stop crying. On May 7, he had surgery to repair it and recovered.

But July 19, Christopher was back in the operating room, this time to fix an abnormal twist in his intestines causing him pain.

Each new complication sets Christopher’s estimated release date back. As far as his heart is concerned, doctors said he is ready to go home, but his kidneys are still a problem.

Once he’s ready to leave the hospital in Arkansas, Christopher will be transferred back to Doernbecher Children’s Hospital in Portland, where he was born. There his parents will learn to use a suitcase-sized, take-home dialysis machine before Christopher can go home.

George said they don’t know how long Christopher will have to be in the Portland hospital, but at least then only 110 miles will separate the family instead of the more than 2,200 miles now.

Though anxious to bring the family back together, Shannon said they will stay in Little Rock as long as needed. She said she’s nervous about providing all of Christopher’s care without the immediate help of doctors, nurses and other medical staff who have been there each step of the way so far.

“We’re so ready to get home, but we don’t want to leave until we know that he’s not going to need any more surgeries,” she said.

Shannon and George credit their faith for pulling them through.

“The Lord gives you strength every day,” she said.

They’re grateful for the help of family and friends; the doctors, nurses and medical staff who have cared for Christopher; and somewhere out there, the family who donated the heart of their lost baby and gave Christopher a chance at life.

In the evenings, the Schroeders like to walk around the Hillcrest neighborhood where they’re staying. Shannon said it helps her unwind and remember life beyond the hospital walls.

They recently celebrated young George’s birthday at Chuck E. Cheese . Big George was in town, and Shannon said they all had a great time.

It was surreal watching all the kids playing and the parents talking like everything was normal, she said. They yearn for the time when Christopher will be with them, going to birthday parties or being pushed in a stroller during one of their evening walks.

Back at the hospital, Christopher - now 8 months old and about 15 pounds - continues to get stronger.

“With every day, he improves a little more,” Shannon said.

George’s sister, Lori, said the family can’t wait to see him grow up.

“We have a big God, and he takes care of us,” she said. “I’m just excited to see what he has in store for this little guy.”

ABOUT THE SERIES

Former Arkansas Democrat-Gazette reporter Carolyne Park spent more than six months following Christopher Schroeder and his family. She witnessed his transplant surgery and met with family members at their temporary home in Little Rock, as well as multiple times at Arkansas Children’s Hospital. The details of Christopher’s care and progress came from family visits witnessed by the reporter and numerous interviews with family members, doctors and other medical professionals directly involved in his care.

Front Section, Pages 1 on 08/10/2010

Print Headline: THE HEART OF THE MATTER Highs, lows mark path of progress

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Leland says... August 10, 2010 at 8:47 a.m.

Stories like this give me hope for our country, inspite of the tough times we are going through. Faith in God can go a long ways when nothing else works. God bless them!!!!!!

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