He’s not exactly coming home a miracle baby, cured of the myriad of problems plaguing him at birth.
But Ryan Nguyen, who was flown from Sacred Heart Medical Center to a Portland hospital during a court battle over his life, will likely be home within a week, his doctor said Monday.
Life won’t be easy for 4-month-old Ryan or his parents - at least not for a while.
He can’t eat on his own, and will need intravenous feeding for up to six months, maybe longer.
He requires several medicines to control his blood pressure and ward off infections and seizures. And part of his bowel still isn’t working normally.
However, doctors at Legacy Emanuel Children’s Hospital in Portland say they’re “cautiously optimistic” about Ryan’s condition.
His parents say they’re just elated to take him home to be with his older brother, Austin, for the first time.
“We don’t mind putting all our effort into him,” said Nghia Nguyen.
“Every time we see our son, it cheers us up. All he has to do is hear our voice and he wakes up. If he’s a little bit slow or whatever, we don’t mind.”
Ryan won’t be coming home to Spokane. His parents moved to Vancouver, Wash., to be closer to Portland after he was transferred there in December.
The baby was thrust into the national spotlight shortly after his birth at Sacred Heart Medical Center on Oct. 27.
Doctors there said Ryan suffered severe brain damage and kidney failure and couldn’t live. Among his problems were seizures, low blood volume and a bowel obstruction. He was on life-support and kidney dialysis.
Ryan had no hope of recovery, said doctors at Sacred Heart, and they wanted to stop the painful dialysis and allow him to die.
A neonatology expert in Portland agreed Ryan would die, and doctors in Seattle and Pittsburgh said they also wouldn’t treat the infant.
The Nguyens were furious. They obtained a temporary court order on Nov. 22 requiring Sacred Heart to resume dialysis until a judge could decide the course of treatment.
During the trial, on Dec. 13, a Portland doctor learned of the case and offered to treat Ryan.
Shortly after his arrival, Ryan was taken off dialysis and a ventilator.
“His breathing and kidneys have improved … I’m concerned about him in a different way,” said Patrick Lewallen, medical director of the Portland hospital’s neonatal special care unit.
Much of the concern revolves around continuing problems with Ryan’s intestines. The baby underwent surgery to remove a blockage and lost more than one-third of his intestines.
“We don’t want him to lose any more,” said Lewallen. “If he has to have any more bowel removed, that puts him at significant risk for not being able to support himself through the normal eating process.”
While Ryan has grown steadily - he weighs more than 13 pounds - doctors are worried because what’s left of his bowel isn’t working properly.
Doctors want his body to adjust to food and are inserting sugar water in his stomach through a tube. He’s up to a teaspoon an hour.
“He’s got a long way to go, of course,” Lewallen said. “He’s got months of feeding issues ahead of him.”
Doctors won’t know the extent of brain damage Ryan may have suffered for several years. But brain scans and tests “all look very promising,” Lewallen said.
“He responds to noise, touch and moves his hands to play with little toys,” he said. “He turns his head toward you, and if it’s his mom or dad, he smiles.”
Ryan, who is on Medicaid, will initially get 24-hour-a-day nursing care. His parents soon will take over.
The Nguyens are learning to read heart monitors, change IVs, and spot signs of infection.
Someday, they plan to bring their family back to Spokane, where Nghia Nguyen has many relatives.
For now, though, they want to stay in Vancouver, where their duplex is a 10-minute drive from Ryan’s doctors.
The Nguyens, who aren’t working, plan to take turns caring for Ryan. Whatever it takes, it’s worth it, Nghia Nguyen said.
“We’re not disappointed. It’s just something that’s making us pray harder.”
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