All area residents experience daily challenges big and small. Many are no strangers to serious medical ailments that result in extended hospital stays. For some, rare medical conditions, frequent hospital visits and transplant operations are unfortunate parts of a way of life.
Those types of challenges could make for a difficult 18-month period for anyone. When those challenges strike a newborn during her first year and a half of life, however, they can be more frightening and even harder to take.
Little Kaelynn Jones and her family know all about that. At just under 19 months of age, to say that she has been through a lot would be a vast understatement.
Kaelynn Jones, the daughter of Angelica Fulton and Brandon Jones, received a liver transplant thanks to a donation from Ms. Fulton’s cousin, Chelsea Marucci, in March.
In May 2010, when Kaelynn was just 2 months old, her parents learned she had a rare condition called biliary atresia, meaning the bile duct between Kaelynn's liver and small intestine had not developed.
In order to quickly remedy the situation, doctors sewed her liver to her small intestine, providing a temporary solution. A permanent fix required a liver transplant, which Kaelynn's relative Chelsea Marucci made possible.
A HELPING HAND
In March, Kaelynn had just had her first birthday during a six-week stay at Women and Children's Hospital of Buffalo. Experiencing liver failure, she needed a transplant fast. A match had not been found until Ms. Marucci, cousin of Kaelynn's mother Angelica Fulton, stepped forward. She traveled with Kaelynn to Children's Hospital of Pittsburgh, donating a piece of her liver to the child March 29.
Six months later, Ms. Marucci has long since recovered. "She was in a little pain," Ms. Fulton said of her cousin, who spent about five days in the hospital. "As soon as she was out, she came right over to see Kaelynn. After a month, she was back on her motorcycle."
Little Kaelynn's health has greatly improved as well. "She's doing fine," Ms. Fulton said of her daughter. "She has a happy liver now."
For several weeks in Pittsburgh this spring, however, Ms. Fulton did not know if Kaelynn would be fine. "They had trouble getting her off the ventilator after the transplant," she said. "We're not really sure what happened."
The uncertainty surrounding Kaelynn's condition resulted in an extended stay in Pittsburgh. "We ended up spending three months down there, when we were only planning on being there for about six weeks," said Ms. Fulton.
Kaelynn spent two and a half months in the hospital but needed to remain in Pittsburgh for a couple of additional weeks for check ups, according to Ms. Fulton, who stayed not so far away in the Ronald McDonald House.
"The Ronald McDonald is nice because it's attached to the hospital," she said, "but it was hard because our family was not there."
Kaelynn returned to Sinclairville in late June, bringing an end to a long and arduous process. "Everything was perfect finally," Ms. Fulton said.
Despite occasional visits to Women and Children's Hospital of Buffalo to take care of issues with her daughter's potassium, her mother likes the progress Kaelynn has made in the past three months. "She's hitting her milestones faster than ever," Ms. Fulton said. "She's gaining about one pound per month."
Kaelynn will travel to Pittsburgh once again in October for a follow-up appointment. In the meantime, she will continue to keep her mother busy as she makes her way along the road to recovery. "It has been hectic. She has been really busy," Ms. Fulton said of her daughter. "We've had a lot of appointment catching up to do with her pediatrician."
While Kaelynn made it through a rough 18-month stretch that led her and some family members out of the southwestern New York area, Ms. Fulton is glad to have her daughter back near her the rest of her family and removed from extended hospital stays. "It's nice to have all of the support around you and to have them able to help you," she said. "This is the longest we've ever been out of the hospital."