MADISON, Wis. – After nine months in the pediatric intensive care unit (PICU) and more than a year in the medical-surgical unit at American Family Children’s Hospital, 3-year-old Kingston Van Rags is finally out of the hospital.
“I can’t believe we’ve come this far,” said Tommy Rags, Kingston’s father. “When I think back to how my son hung in the balance for so long, I feel so grateful to be in this moment now.”
Kingston was born in October 2018 and at first looked as healthy as most newborns. But when he was three months old, he developed a lump in his abdomen, and his doctor in La Crosse told them they needed to go to American Family Children’s Hospital immediately.
Life will never be the same, Rags said.
At American Family Children’s Hospital, Kingston was soon diagnosed with congenital nephrotic syndrome, a rare kidney disease that causes the body to excrete too much protein in the urine, a protein that is essential for regulating body fluids and managing infections, as well as promoting growth and development.
His kidneys would never work properly and the only cure would be a kidney transplant, but at that point he was too young, according to Dr. Neil Paloyan, pediatric nephrologist, UW Health Kids.
To manage the disease until he was old enough to receive a transplant, Kingston had a port inserted to receive extra albumin, a protein that carries hormones, vitamins and enzymes throughout the body. He also received nearly 20 additional daily medications, many by IV injection, and was fed through a feeding tube, or G-tube, that was surgically attached to his stomach to help Kingston get the nutrition and hydration he needed. .
At just one year old, both of Kingston’s kidneys were removed and he had to be on dialysis at home. This worked well for a few months, but in September 2020, Rags noticed that Kingston seemed uncomfortable and restless, so she took him to the emergency room. The two were now living in Wausau, and local emergency responders told Wraggs she needed to take Kingston to UW Health Kids in Madison in the morning.
“My fatherly instinct said ‘get him now,’ so I rushed him to American Family Children’s Hospital,” Rags said.
It was the right call. They arrived in Madison at 2 a.m. and soon after, Kingston went into cardiac arrest, but doctors and nurses were able to revive him. They discovered that Kingston had developed another extremely rare condition; a flesh-eating bacterial infection where the G-tube met his stomach. This infection would require Kingston to stay in the PICU and fight for his life for almost a year.
When Kingston was well enough and the infection cleared, he was moved to the medical surgical unit to wait for a new kidney. Surgeries and infections meant finding a donor wasn’t easy, but finally, in June, a perfect kidney match was found and Kingston finally got the gift he needed, according to his UW Health Kids pediatric transplant surgeon. Dr. Tony D. — Alessandro.
“Kingston beat so many odds,” D’Alessandro said. “First with his diagnosis, then with such a severe infection, and even just finding a kidney donor that could work for his size and complications, it’s such a joy to see him out of the hospital.”
Dr. Alison Redpath Mahon, one of Kingston’s nephrologists, is also happy to see him on his way home.
“There were times when we didn’t think he would ever leave the PICU or the hospital,” she said. “We don’t really use the word miracle in medicine, but Kingston is a miracle.”
Although the ups and downs were tough and the wait was often harder, Wraggs called the care they received from the UW Health Kids team incredible.
“Not only were they there every step of the way for my child, but they also checked on me and my well-being countless times,” Rags said. “They wanted to know if I ate or slept, they took care of me when I was focused on taking care of King.”
Rags couldn’t say enough good things about Kingston’s nurses in particular.
“Kingston has about 30 or 40 mothers,” Wraggs said. “They took care of him, rocked him to sleep, braided his hair, loved him like their own child.”
UW Health Kids’ child life specialists as well as dozens of his nurses and doctors gathered to celebrate Kingston’s discharge and send him off with signs, pom poms, bubbles and cheers.
Rags and Kingston will transition to life outside the hospital at the Ronald McDonald House.