Beating the odds
September 29th, 2022
Kingston was born in October 2018, and after a ‘bulge’ appeared in his abdomen at three months old, his physician said they needed to go to American Family Children’s Hospital, immediately. There, he was diagnosed with congenital nephrotic syndrome, a rare kidney disorder that causes the body to pass too much protein in urine. The protein deficiency made it so Kingston’s body could not properly regulate fluids or manage infections, and his growth and development were negatively affected.
That was the beginning of a long unpredictable journey for Kingston and his dad Tommy. For nearly a year, Tommy managed Kingston’s G-tube feedings and medications and drove 2 ½ hours one way to Madison for monthly follow-up appointments. This extensive medical care worked for the first year of Kingston’s life. Then, one evening in September 2020, Tommy noticed that Kingston was uncomfortable and seemed restless.
Tommy says, “My daddy instinct said, ‘take him now,’ so I drove him to American Family Children’s Hospital.”
Tommy and Kingston arrived at 2 a.m. Fluids were leaking from the G-tube in Kingston’s side, and the situation became dire very quickly. Kingston went into cardiac arrest, but the physicians and nurses were able to revive him. The team soon discovered that Kingston had developed another extremely rare condition; a flesh-eating bacterial infection where the G-tube met his stomach. He would spend the next nine months in the Pediatric Intensive Care Unit (PICU).
“For nearly a year, I never left his side. I lived in the ICU and slept in a chair,” said Tommy.
The nurses tried to convince Tommy to stay at the Ronald McDonald House knowing that he needed to care for himself so that he could take care of Kingston. Tommy finally decided to visit the Ronald McDonald House when Kingston was moved to general care.
“The first time I laid down on the bed I felt like I was falling,” said Tommy. “I had to grab the bed. My equilibrium must have been off from not fully laying down for months. I did not realize the damage that had been done by not actually sleeping in the hospital.”
When he first arrived at the House, Tommy explained that he couldn’t be around people with the trauma he had experienced. He needed seclusion and privacy. Tommy kept to himself, coming and going from the House during quiet times so that he wouldn’t run into other people. After a few months, he ventured out into the common areas of the House when other families were there.
“I was pretty withdrawn at first but slowly I started interacting with other families and realized it was actually what I needed to heal. Conversations with other parents helped me and them,” said Tommy.
Once Kingston’s infection cleared and he was stable, he was moved from the PICU to the Medical Surgical Unit of the hospital. As he grew, the search for a new kidney began. In early June of 2022, Kingston got his new kidney. Kingston’s recovery went smoothly and on June 29, Kingston was discharged from the hospital to the Ronald McDonald House.
“The Ronald McDonald House feels like coming home. When you are there, they keep it simple. I have not grocery shopped or cooked for myself in over a year. I am healthier than I have ever been. The Ronald McDonald House has so many healthy options. There is always water, fruit, juice, eggs, and spinach. If you are lucky enough, eating this way becomes your new norm. I cannot go without fruit now,” said Tommy.
With a new kidney, Tommy and the medical team noticed remarkable changes in him. He is getting stronger every day. Tommy is making plans to move to Madison so he and Kingston can be closer to the hospital for support and specialized care. In the meantime, Tommy and Kingston will call the Ronald McDonald House their home when they come to Madison for care.