Shannon Russell, Jaxon's father, said when his son had the second surgery at a different hospital it lasted four hours longer than expected because of infection and scar tissue left behind from the first surgery at Kentucky Children's. He said the second surgeon also found a hole in Jaxon's heart that the first surgeon missed, and corrected it.
"Our question is, how many other babies did this happen to?" said Russell, who, with his wife Miranda, started Lil' Heart Sluggers to help other patients of children with congenital heart defects.
'OK isn't good enough for me'
Dr. Michael Karpf is the first to admit his hospital's heart surgery program was not the best.
Karpf is executive vice president for health affairs at the University of Kentucky's health care system, which includes Kentucky Children's Hospital. He said he put the pediatric heart surgery program on hold because the mortality rates weren't what he wanted them to be.
"They were OK, and OK isn't good enough for me," he said. "It's got to be better. It's got to be good."
In December, a local reporter asked for more details. Brenna Angel, who worked for the university-owned radio station, asked the university for the mortality rate for all pediatric cardiothoracic surgeries performed over the past three years. She also asked for the number of surgeries performed by Plunkett, the date of his last surgery, and payments received for his surgeries.
The university answered some of her questions: Plunkett operated on 110 children in 2010, 81 children in 2011 and 62 in 2012, often performing multiple surgeries on one child. In 2010, UK HealthCare received $288,522 in payments for his surgeries; in 2011, it was $255,380.
But the university refused to release the date of Plunkett's last surgery or the mortality rate, citing the federal patient privacy law known as the Health Insurance Portability and Accountability Act of 1996. The university's lawyer said even though Angel was only asking for numbers, those numbers could eventually be linked to patients' names.
"Because Dr. Plunkett performs relatively few surgeries and because all of his surgeries are highly complex surgeries, it is relatively easy to deduce the identity of his patients," wrote William Thro, the university's general counsel.
Angel filed an appeal with Attorney General Jack Conway, citing the state's Open Records Act, which requires that public agencies, such as public universities, open most of their records to the public.
The attorney general asked the university to let him look at the data privately. The university said no, again citing patient privacy laws. The attorney general disagreed with the university and found it in violation of the open records law.
In April, the university appealed the attorney general's decision to state circuit court.
Hospital plans to do heart surgeries again
While the legal battle continues, the University of Kentucky has been doing its own internal review of the events last year.
Plunkett returned from his month's leave of absence and then later resigned from the University of Kentucky to take a position with the University of Florida.
Dr. Timothy Flynn, senior associate dean for clinical affairs at the University of Florida College of Medicine, said he spoke to surgeons who worked with Plunkett in Kentucky.
"They thought Dr. Plunkett performed very, very well," he said. "We did the due diligence on his skills, and we think he'll do excellent in our environment."
The Kentucky hospital plans on hiring a new surgeon and opening the program back up again at some point. Karpf, the UK HealthCare executive, said parents don't need to worry -- when it reopens, the program will be first class.
"I won't be satisfied until our program is as good as anybody's program," he said.
But Connor, Jaxon, and Waylon's parents aren't so sure.
They say it's troubling that doctors and nurses gave them vague answers when they asked specific questions. For example, their sons had very complex surgeries, and they wanted to know how many times Plunkett had done their specific procedures and what his success rate had been.
"I want to know statistics, I want to know hard facts," said Lucas Rainey, Waylon's father. "But they just said, 'We see this all the time. It'll be fine.' "
Karpf said he's not sure parents would understand statistics and rates.
Karpf says he worries that most people would "have a hard time understanding data."