Sitting in his hospital room, surrounded by beeping machines with tubes coming out of his body, little Kaysen Hyman wondered if he’d ever be a “normal child” again.
The 9-year-old Brooklyn boy was awaiting a life-saving multi-organ transplant, after having already spent nearly a year in and out of medical facilities — and desperately wanted to be home for Christmas.
“I told him once you get your transplant you’re going to go home… you’re going to be a normal boy, go to school, play basketball,” his mom, Phylicia Hyman, told The Post.
It wasn’t that easy. But after grueling surgery and months of hard work on the part of little Kaysen and his crew of caregivers, the brave boy finally got his wish granted and will spend the holiday in his apartment.
“He’s been through a whole lot,” his mom said. “It’s amazing how far he’s come in such a short time. It’s remarkable.”
Due to lifelong medical issues, Kaysen had to get a new stomach, pancreas, liver and small and large intestine during a single transplant surgery at NewYork-Presbyterian in October.
When he got to St. Mary’s Hospital for Children in Queens for rehabilitation, he needed a wheelchair and couldn’t stand for more than one minute at a time.
He spent the next two months there learning how to walk again and do basic activities, like brushing his teeth and getting dressed on his own.
“He used to always say, ‘Why can’t I be a normal child?,” his mom recalled.
Her son was born eight weeks early with Necrotizing enterocolitis, a devastating disease that affects mostly the intestine of premature infants.
Following a surgery at two days old, Kaysen was fine for the next eight years, until, last October, when he began throwing up “green, yellowish stuff,” his mom said.
He was rushed to the emergency room with an obstruction in his intestine.
Two surgeries and many months later, the boy couldn’t eat on his own, requiring a catheter and IV for nutrition.
“He kept asking ‘Am I going to die?,’” his mom recalled. “He would break down. He kept saying he doesn’t want to die.”
“I was very nervous and just kept praying, hoping for the best.”
When he got to NewYork-Presbyterian’s Morgan Stanley Children’s Hospital in February, he was a “desperate case,” said Dr. Mercedes Martinez, the medical director of the intestinal transplant program there.
“By the time he came to us he had been through so much,” and had a badly-damaged liver, stomach and had lost nearly all of his intestine, Martinez said.
Doctors believed the only way Kaysen could survive was with a multivisceral transplant, which includes removing the damaged organs and simultaneously replacing them with new ones, including the liver, small intestine, pancreas, stomach, and large intestine from a donor.
“Without this surgery, he could have died,” Martinez said.
Kaysen was sent home in March to wait for a donor — but his condition kept getting worse and he returned to the ER nearly every two weeks with fevers and issues with his catheter, his mom and doctors said.
Finally, on Oct. 12, the family got a call. A donor had been found.
But even after the surgery, there was still a lot more Kaysen had to work through to make it home.
He spent the next two months at St. Mary’s in Bayside re-learning to do everything little boys his age can do, during therapy sessions to improve his strength, balance and endurance.
“He just really pushed through. Even when it was super hard and even when he didn’t want to do therapy, he got out of bed and did it anyway,” said Amber Carmientke, the boy’s occupational therapist.
“In all aspects of his life he’s shown tremendous gains,” she said. “He really did all the work to get… here he really found that motivation within himself.”
Through it all, Kaysen talked about missing family and his home and “how he really wanted to be able to have a normal Christmas,” Carmientke said.
Even Martinez, the NewYork-Presbyterian doctor, said she had “really wanted to get him home for Christmas.”
On Wednesday, Kaysen strolled through St. Mary’s doors on his own, ecstatic, and surrounded by his mom and caregivers.
“Its so amazing to know he’s going to be able to be with his family for Christmas and have a normal life,” Carmientke said.
“He worked so hard he deserves to be able to spend this special day with his family.”
Though he still needs a feeding tube, Kaysen can eat some solid foods, like his favorite, chicken soup, which his mom plans to make him for the holiday meal.
Phylicia said it’s amazing to have her son home — and thanked the team of healthcare workers who were able to get him there, calling them “a Godsend.”
“Last year, he spent Christmas in the hospital…,” Phylicia said. “It’s amazing to have him home.”