12-year-old Miley McKee, from Co Wicklow, has been waiting for urgent spinal surgery since August 2020.
12-year-old Miley McKee, from Co Wicklow, has been waiting for urgent spinal surgery since August 2020 and was “all ready to go” up until two weeks ago, when she and her family hit a major obstacle.
“This day two weeks ago, we learned that they can’t continue with the operation because they can’t nurse Miley post-operatively because she has a tracheostomy,” her mum Ann told RTÉ’s Drivetime.
“They don’t have the nursing resources to be able to nurse Miley post-operatively on the spinal ward, this is what they’re telling us.
“Crumlin have tons of tracheostomy-trained nurses, but they need to be able to move the resources around so they’re on the spinal ward when Miley is there.”
She said that it’s imperative that Miley, who is “profoundly intellectually disabled”, gets the operation soon as she’s in constant pain.
“Miley is beyond in pain. Her ribs are actually sitting on her pelvis and her spine is crushing her lungs. Her lungs are deteriorating as well.
“When she wakes up, she’s screaming in pain as we’re trying to recoil her. The pain is diminishing her personality at this stage.
“She is a funny, clever, beautiful child but you can see the pain etched onto her face all the time. There aren’t many smiles anymore. We don’t know what to do.
“The operation will take the lungs off her pelvis and it will stop her lungs being crushed. It will ease her pain and overall, it will stabilise her spine so that she can go back to school and live life again.”
Ann explained that the situation is putting a strain on their family life as her wife Charlene and their other daughter Porter (5) moved out of their home last month to protect Miley from illness in the lead up to the operation.
“Porter went into junior infants this year, so she was going to be bringing home viruses. We needed to keep Miley in tip top shape in order to get her to the operation.
“November is going to be our third month apart. They’re still out of the house.
“We’ve been trying to keep Miley well for most of the year in order to get to all these procedures for the best outcome for an operation.”
Ann concluded by calling on the HSE and the Department of Health to improve healthcare procedures for patients with complex needs.
“There have been huge leaps in scoliosis care, we understand that. However, need to be able to care for their complex patients as well... Get Miley the post-operative nursing care,” she said.