Daisy Xu

Mad Grit: Thriving with a tracheostomy


Seven months ago, Daisy Xu was three months into a world trip and on top of the world.

Then, while motorbike riding across Vietnam with friends, she crashed and broke her spine, becoming quadriplegic.

Daisy's memories of those early days in the sweltering Vietnamese hospital are hazy. She remembers clearly the panic when she couldn't breathe anymore, and being rushed to the Intensive Care Unit (ICU) to be ventilated. She also remembers the pain and discomfort of being placed in a clunky metal halo - and the excruciating pain when she was taken off painkillers.

"I gave up the will to live... I was ready for death to take over me," she wrote later. "That was the scariest thing I have ever felt in my life, and to say that I have fallen to the lowest low is an understatement."

Daisy's breathing tube in Vietnam was put in incorrectly. Pushed in too far, the ventilator wasn't inflating her left lung at all, and was filling her right lung with twice the amount of air required. She developed severe pneumonia, and one of her lungs collapsed.

Ten days after the accident, on an emergency flight home organised by her travel insurer, Daisy's other lung collapsed and she had to undergo emergency treatment mid-flight.

The Austin Hospital

On arrival in Melbourne, Daisy was rushed to Austin Hospital.

Her luck had turned: Austin Health is a world leader and the statewide provider for respiratory and spinal care. It is also one of a handful of hospitals in the world that achieve the best outcomes for patients who require a tracheostomy - a breathing tube inserted into the windpipe (trachea) through a hole in the neck - thanks to the Tracheostomy Review and Management Service (TRAMS).

People with a tracheostomy treated at Austin Health are more likely to learn to speak earlier, wean from a ventilator earlier, have the tracheostomy tube out and leave the hospital earlier than patients from other hospitals. For patients who cannot have the tube removed, TRAMS and the Victorian Respiratory Support Service (VRSS) help patients live well and safely in the community.

Within a month of arriving at the Austin Hospital, Daisy was able to speak again and was out of ICU and in the Acute Spinal Unit. She learnt to swallow, eat, drink and has started a blog, which she authors using speech recognition software.

With the assistance of music therapist, Dr. Jeanette Tamplin, she has even learnt to sing while on ventilation. She has a wonderful voice.

Daisy Xu

Daisy singing at the Tracheostomy Patient, Family and Carer Festive Forum with music therapist, Dr. Jeanette Tamplin.

Thriving with a tracheostomy

Daisy's fast progress is in large part thanks to the close teamwork and collaborative excellence of TRAMS, VRSS and the Victorian Spinal Cord Service. Importantly, however, it is also due to her positivity and attitude toward recovery.

Last week, Daisy was awarded one of two ‘Thriving with a Tracheostomy' Awards at Austin Health's Tracheostomy Patient, Family and Carer Forum, alongside Steven Stewart.

TRAMS Clinical Nurse Consultant Kristy McMurray says that "Daisy and Steve have amazed us all with how they have not just got on with their lives, but thrived even in very difficult circumstances."

On why she thinks she received the award, Daisy says: "I try hard. I like to try everything. Because in the end, it's my life."

The Acute Spinal and Respiratory Wards also received an award - as did nurses Hallie Silver and Kim Boon.

Ms McMurray said that both nurses were "nominated by patients...They have gone above and beyond in times of need for their patients and this award recognises the appreciation their patients have for them."

"The patients that are cared for on these wards would in any other hospital be required to remain in ICU. This award ... recognises the excellent team work shown every day on every shift to support very complex patients with such compassion and dedication."

Other awards included the Carer's Award - which went to Daisy's dad, Geoffrey Xu, who has barely left her side, and the Consumer Advocacy Award, which was given to Kirby Littley.

TRAMS is a founding member and model service for the Global Tracheostomy Collaborative (GTC), which aims to improve the quality and safety of tracheostomy care for all patients. The GTC's patient and family committee creates change and improvement by teaching healthcare professionals about the experiences of people living with a tracheostomy.

Austin Health's own Patient and Family events give past and present tracheostomy patients and their families an opportunity to meet and share stories with other patients and their families, and hear news about tracheostomy care around the world. To find our more, visit www.globaltrach.org and http://tracheostomyteam.org/patients/

You can follow Daisy's blog, Mad Grit, at https://daizy4life.tumblr.com/

Tap into the Twitter conversations around tracheostomy news and care by following the hashtag #GTCbettertracheostomycareeverywhere