Nghia Nguyen cradled his crying son in his arms and sang his first lullaby since bringing Baby Ryan home - “Amazing Grace.”
First in his native Vietnamese, then in English, Nguyen sang softly, mixing up the words at times. His wife, Darla, giggled. Four-month-old Ryan quieted.
It was a peaceful moment Monday in an otherwise frantic day. A day of emotional goodbyes from the staff at Legacy Emanuel Children’s Hospital in Portland. A day of last-minute tips from Ryan’s doctors. A day that started with a quick trip to rent a van for hauling home boxes of medical gadgets that will flank Ryan’s crib for months to come.
By 3 p.m., Ryan Nguyen was in his parents’ Vancouver, Wash., home at last, tucked in a crib next to his older brother’s bed.
The Nguyens say the homecoming shows they were right in battling Spokane doctors. Weeks after Ryan’s birth on Oct. 27, physicians at Sacred Heart Medical Center had wanted to stop his kidney dialysis, diagnosing him as terminally ill.
Portland doctors who have been caring for him since then warn that it won’t be all smiles and lullabies.
“He’s not out of the woods by any means at this point,” said Patrick Lewallen, one of Ryan’s neonatal doctors.
The baby still faces potentially life-threatening problems. He isn’t eating on his own and his bowels still aren’t working properly. < A feeding tube taped to Ryan’s chubby face funnels fluids into his stomach, although he gets most of his nutrition from IV fluids running through a tube that stretches from a vein near his neck.
A third tube taped to Ryan’s abdomen suctions gases from his stomach.
The Nguyens will get help from nurses, who will stay at their two-bedroom duplex around the clock for two days before turning over much of Ryan’s care to his parents.
Darla Nguyen admits needles make her nervous and she has no medical training other than the crash courses she got before leaving the hospital.
On Monday, however, the 31-year-old mother was elated. She had hardly slept the night before for fear the alarm wouldn’t go off and she’d oversleep on the big day.
“Finally, he gets to be home with us,” she said, before cooing to her dark-haired baby. “No more hospitals for you.”
Ryan’s brother, Austin, was staying with relatives in Spokane on Monday. The welcoming crew included his nurses and Spokane attorney Russell Van Camp, who said he’ll soon file a lawsuit against Sacred Heart Medical Center on behalf of the Nguyens.
The couple spent the past few days stocking up on baby supplies - a stroller, a car seat, a swing set and diapers. They’re also replacing clothes that Ryan, who weighs more than 14 pounds, has outgrown.
Hospital officials won’t reveal the cost of his stay at Legacy Emanuel, but neonatal care usually runs from $1,200 to $1,500 a day. Ryan, whose medical care is covered by Medicaid, has been at the hospital since Dec. 13.
Ryan was flown to Portland during a court battle in Spokane between his parents and Sacred Heart, where doctors said he suffered severe brain damage and kidney failure and couldn’t live.
He suffered a myriad of problems, including seizures, low blood volume and a bowel obstruction. Doctors said his painful kidney dialysis was inhumane and should be stopped so nature could take its course.
Randall Jenkins, a Portland doctor, agreed to treat Ryan after reading a newspaper story about the case.
Before Ryan left the hospital Monday, doctors spoke to a crowd of news reporters and photographers who have been following his progress.
“Part of me feels sort of tickled that he’s done so well,” said Jenkins.
“I’m quite certain I was right in doing what I could to help him. I guess that’s all I can say.”