Worst Over for Liver-transplant Toddler, says Dad

Despite a longer stay than expected in the intensive care unit (ICU) for Nelson nine-month-old twin Louie Charles after his liver transplant in Auckland earlier this month, his family say the worst is over.

Deon Charles said his son was doing really well, and was more alert.

"He's opening his eyes more. He's still in ICU, but they are hoping to get his breathing tube out in the next day or two."

His stomach was now closed up, and he would go to the ward a couple of days after the breathing tube was taken out.

They had no idea how long he would be in there for, he said.

"But I think we're fairly comfortable with where he's at, and the team that looks after him is excellent. We've just had to put our trust in their hands, and try not to worry about it.

"We're through the worst now – the hard part is over and it's just getting him back up and running development-wise."

He said the time Louie spent under sedation had been a lot longer than expected.

"In general, liver transplant [patients] tend to spend about 24 to 48 hours in ICU before going to the ward, not two weeks.

"But it's just with the complications that have developed and infections, and we're lucky it's nothing to do with his liver.

"His liver function is fantastic. I've spoken to the nurse and there have been kids sedated a lot longer than he has been and they tend to bounce back.

"He will probably take a step back development-wise, but there's nothing to say he won't get back up to speed well enough."

The family have had a bit of a stressful few days, with Louie's twin, Kees, also spending time in the emergency department on Sunday after developing bronchiolitis.

"When it rains, it pours. We haven't been getting a whole lot of sleep lately.

"[Kees's] got a nasty cough, and unfortunately it keeps him away from Louie, so we haven't been able to take him to see his brother. It's definitely been a long, hard two weeks, but we're getting there."

Mr Charles said he was feeling better each day, but was still a bit sore.

"Coughing and sneezing is definitely pretty high on the pain threshold factor."

Louie was diagnosed at birth with a rare genetic disorder, propionic acidaemia, which prevents his body from breaking down certain amino acids.

Mr Charles donated part of his liver to his son in one of the first transplants of its kind for someone with Louie's condition in New Zealand and Australia.

By Sarah Young - The Nelson Mail

Photo by Martin de Ruyter