IT WILL be a very emotional Christmas for one Bega Valley family, with their daughter home after 411 straight days in Westmead Children’s Hospital.
Alayne Drowley, 14, has spent the past four Christmases in a hospital bed - the most recent stay was only one of many - but was welcomed home by her family this week.
However, her return does not spell the end to her medical troubles.
According to her older brother Rowan, Alayne’s has been a “long and tumultuous path” without any real answers.
Her diagnosis, to the best of anyone’s knowledge so far, is “total intestinal failure”.
It means Alayne’s nerves are dying right throughout her digestive tract.
“We don’t know her longevity – it could be months or she could have 20 years – there’s no actual way to know,” Rowan said.
“But it’s great to have her home.
“It’s important to have her here and not in a hospital bed.”
Mum Lisa has been at Alayne’s hospital bedside the entire journey and said she has had to learn as much about nursing – perhaps more – than many medical professionals the Drowley family have dealt with over the years.
She and her husband are now essentially full-time nurses with Alayne’s homecoming.
“She is on a central line and on IV fluids for 16 hours overnight just to keep her alive,” Ms Drowley said.
“She has had 11 anaesthetics, seven surgeries and I’ve lost count of the number of tests and X-rays.”
Ms Drowley said there is no cure and no real treatment other than managing it to the best of their ability.
Every trial to feed Alayne through the digestive tract has failed, so the plan is to keep her at home as long as possible on “total parental nutrition” (TPN).
In order to do so, both Lisa and her husband have had to be trained in managing TPN, as well as have Bega Hospital prepared to care for her should she take a turn for the worse.
“There are many life-limiting issues related to TPN feeding,” Ms Drowley said.
“Along with sepsis line infections, liver failure will develop over time.
“We have accepted these associated risks as there are no other options for Alayne other than placing her in palliative care.
“Alayne has remained a happy child.
“She always bounces back from every setback and procedure that is performed.
“To be home for Christmas is nice.”
* A support page for Alayne is on Facebook for anyone wanting to share their best wishes. Click here to visit the “Angels for Alayne” page.