WHEN Kathleen King's son was born 23 weeks into her pregnancy, she knew it would be a long road ahead.
Icestain was born on September 5 and has been fighting for his life ever since in the Royal Brisbane Children's Hospital.
Icestain was born with his stomach on the outside of his body, which has seen him undergo surgery.
But being a premature baby has seen him struggle with chronic lung disease, among other issues. Kathleen and her fiance, Robert Pennell, have been by his side every day.
The Rockhampton parents, who have four other children, don't need more worries. But they have them.
Icestain will be moved to the new The Lady Cilento Children's Hospital when it opens on November 29, along with all other patients.
The new hospital will bring together the Royal Children's Hospital and Mater Children's Hospitals.
While Icestain will be in safe hands, his family will be too far away for comfort in their current accommodation, located near the Royal Brisbane Children's Hospital.
Kathleen said she hasn't heard from anyone about how they'll get to and from their accommodation to the new hospital.
"No one's told us about transfers. We don't have a clue (what's going on)," Kathleen said.
"My other kids will be going (to The Lady Cilento Children's Hospital) for school.
"We can stay at Herston Lodge, near the old hospital, but if there's any emergency and Icestain goes downhill, we won't have time to get to him quickly."
The family have moved their life to Brisbane after their son was born, having sold their belongings and giving up their rental home.
"We have no family in Brisbane. We moved because our boy is sick and he'll need a lot of check-ups, and we won't be able to afford to go back and forth to Rockhampton with flights," Kathleen said.
While the family hasn't received any information on how they'll get to or from the hospital, the Children's Health Queensland chief executive, Dr Peter Steer, has tried to clear up confusion on the issue.
"Families will have access to our free shuttle bus service. In certain circumstances, for example, an immune-compromised patient, we might assist a family with taxi vouchers. We might also provide a family with taxi or parking vouchers if they need to travel between scheduled shuttle services," Dr Steer said.
"Discussions are under way with a number of shuttle bus providers and charities to arrange this service. It will be up and running for 29 November."