‘I have a broken heart’: 3-year-old Nine Mile Falls boy to undergo third heart surgery in May

A roughly 12-foot-long string of beads might best exhibit 3-year-old Graycen Pruett’s tough start to life.

Each black bead represents a needle poke, such as an IV or blood draw, he’s experienced. There are several of those.

A square heart bead shows an admission to the cardiac intensive care unit. Two of the beads represent his two open-heart surgeries.

The beads are from Beads of Courage, a nonprofit organization that allows children with serious illnesses to tell their treatment journey with colorful beads.

“I just love this because this just shows his journey for people who aren’t a part of it, and who maybe don’t necessarily understand,” said Jaclyn Pruett, Graycen’s mother.

Graycen was born with heart disease, which has required several hospital visits, costly medical bills and constant monitoring at home. The curly red-haired child from Nine Mile Falls is waiting to undergo his third – and hopefully final – open-heart surgery next month at Cook Children’s Medical Center in Fort Worth, Texas.

“This is the big surgery that we’ve been waiting on,” Jaclyn Pruett said.

The couple moved from Texas to Washington in fall 2021. Jaclyn Pruett said Graycen still receives cardiac care at Cook Children’s Medical Center, where he was born, but Providence Sacred Heart Medical Center in Spokane has been phenomenal to work with as well.

She said she and her husband, Kris Pruett, learned their son had heart issues when she was pregnant.

Graycen was eventually diagnosed with four heart conditions, including two conditions that are grouped together by doctors: dextrocardia (heart is on the right side of the chest instead of the left), pulmonary atresia (valve that controls blood flow from the heart to the lungs doesn’t form), ventricular septal defect (hole in the wall that separates the two lower chambers of the heart), double-outlet right ventricle (the body’s main artery and lung artery do not connect to the usual areas in his heart) and congenitally corrected transposition of the great arteries (both heart ventricles are reversed).

Jaclyn Pruett said doctors group the last two conditions together.

Graycen had his first heart surgery at 1 week old when his heart was about the size of a walnut, she said.

While still overwhelming and heartbreaking, the first surgery was easier to experience than the second one because of the whirlwind environment of having a newborn, Jacyln Pruett said.

“This is such a new world that we’ve been thrown into,” she said. “We’re just in ‘go’ mode. We don’t really have time to think. We don’t really have time to process.”

Graycen had his second surgery at 6 months. His mom said that one was more difficult because he was developing a personality and starting to crawl, and she and her husband had more time to process.

Both surgeries were expected, and he is now physically big enough for the third surgery.

“It’s a little alarming to see a scar go down your kid’s chest,” Jaclyn Pruett said.

She said the third surgery, a biventricular repair scheduled for May 30, has “thrown us for a loop” because they picked the date late last year and will have had about six months to prepare and stress about it. The couple has three other sons, including 9-year-old twins, who are starting to understand and fear for their brother’s health.

The surgery is expected to last 10 to 12 hours if all goes well. Doctors will “aggravate” the heart about a week later, and if the heart is thrown off rhythm, Graycen could receive a pacemaker .

Ideally, Graycen will only require minimally invasive procedures, like a heart catheter, in coming years, his mother said.

How well the surgery goes and whether he gets a pacemaker will determine what sports and activities Graycen can participate in.

Meanwhile, Graycen can generally live a normal life.

“He’s a normal toddler,” Jaclyn Pruett said. “He likes to run around. I mean, he obviously gets tired a lot faster.”

She said it’s “hard to see” when he can’t do certain things, like play soccer, other children his age can.

“He keeps up with his brothers as best he can, but even at that, he has to stop and sit down and take it easy,” she said.

Graycen hooks up to his oxygen tank when he gets worn down. He also wears a pulse oximeter on his finger to monitor his oxygen saturation level and heart rate.

A normal oxygen saturation level is 95% to 100%, but because of his heart, Graycen’s level fluctuates between 75% and 85%.

Jaclyn Pruett said her son’s lips and fingertips turn purple if his oxygen level dips too low. When that happens, she or her husband will pop the oxygen tubes back in his nostrils, and he’ll take deep breaths.

She said they always have an oxygen tank around and bags of supplies ready in case they need to rush to the emergency room.

Graycen requires his oxygen tank almost 24/7 as he approaches his surgery date and because of a recent respiratory syncytial virus infection that hospitalized him. The virus led to bronchitis, but Jaclyn Pruett said her son has recovered.

RSV can put Graycen at risk for severe illness because of his heart conditions.

“When they said he had RSV, I freaked out a little bit,” she said.

She said Graycen is more prone to respiratory illnesses because his heart is on his right side, which creates a greater chance of a collapsed lung.

Kris Pruett said his son got pneumonia and had a partially collapsed right lung a week after his second heart surgery.

Graycen understands his condition as much as a 3-year-old can and knows doctors are going to fix his heart, his mom said.

For example, last year Graycen was running around pretending to be Buzz Lightyear when all of a sudden, he stopped and started crying, saying he can’t be the “Toy Story” character.

“I have a broken heart,” Graycen told his mother.

Besides the stress of an impending serious surgery, the couple is also worried about the costs associated with their son’s medical conditions.

She said she sometimes refers to Graycen as their “million dollar baby” because the couple would have had to fork over more than $1 million for Graycen’s medical bills the past three years if they didn’t have medical insurance.

Jacyln Pruett said they rely on their Christian faith, friends and family to push through the hardship.

The couple’s friends and church members organized a fundraiser Saturday in Suncrest to help ease the financial burden. The fundraiser included a car show, silent auction, raffles and Texas-style barbecue.

A fun run May 13 will also raise money to cover costs for food, gas and lodging while the family is in Texas. Jaclyn Pruett said the primary goal of the fundraisers are so Graycen can recover in Texas.

She said Miracle Flights, which provides free flights to families like Graycen’s who are trying to access critical medical care, is covering the flight costs for Graycen and his parents.

Jaclyn Pruett said she and her husband try to ensure their son experiences everything possible, even if it means towing around his oxygen tank.

“We have always been very determined that his condition will not stop him,” she said.

She said he was recently riding his bicycle faster than she expected, and she tried to keep up behind him with his oxygen tank.

“He just desperately wants to go, and do, and be free,” she said.