- Associated Press - Friday, May 23, 2014

NORFOLK, Neb. (AP) - A Nebraska boy and his family finally are getting used to their new life at home near Norfolk.

Keagan Sullivan weighed just 1 pound, 8 ounces when he was born early on Sept. 7, 2011. He then spent the first 30 months of his life tethered to hospital machines that helped him breathe and kept him alive.

He finally went home last month, still attached to machines that constantly must be monitored, the Norfolk Daily News said (http://bit.ly/1p0xg8g ).

His mother, Katlinn Sullivan, stayed at Carolyn Scott Rainbow House near Children's Hospital in Omaha while her son was being treated there. She came home a day or two each week to see her husband, Robert, and daughter, McKenna, and then headed back to Keagan’s side. Robert Sullivan stayed in Norfolk for his work as an athletic trainer while McKenna went to school. They went to Omaha on weekends.


“It’s so nice to be in one spot … and to not have to travel every weekend,” Katlinn Sullivan said.

Now they get to gather around their kitchen table for meals and watch movies together. Keagan’s ventilator and a cart with monitors are always nearby. His meals are delivered in liquid form through a tube, and he is learning sign language because the ventilator prevents him from speaking.

“He’s moving a lot more,” his mother said. “And he’s learning more sign language. He can sign family names … and simple words.”

She has a genetic disorder that required medication to reduce the threat of blood clots. She learned of it after McKenna was born in 2008. McKenna was delivered 12 weeks early and spent 92 days in a hospital before coming home.

Katlinn Sullivan said she learned she was pregnant with Keagan in April 2011, and that problems began about four months. He was delivered in early September 2011, before his lungs were fully developed.

Keagan traveled to Texas Children's Hospital in Houston where he was evaluated for a lung transplant, but doctors decided against it, believing with time and treatment his lungs might improve.

Keagan left the Omaha hospital April 17, and his mother said he will probably be on a ventilator for a couple of more years.

If his lungs don’t improve, he might have to have a transplant, she said.

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Information from: Norfolk Daily News, http://www.norfolkdailynews.com