There’s no place like home

More than 30 children with complex breathing issues across NSW and ACT are now safely cared for at home, thanks to the incredible efforts of the Chronic and Complex Airway team at Sydney Children’s Hospital, Randwick (SCH). This multidisciplinary team work collaboratively with local clinicians to support children with artificial airways, tracheostomies (artificial airway) and mechanical ventilation. Their ultimate goal is to prevent long-term hospitalisation and ventilation which occasionally comes with the lifesaving intervention, and keep patients safe with their families in the comfort of their own home.

Corey has been a patient of SCH for more than 10 years and has many health needs, he is well known to various teams having been in and out of the hospital for treatment his whole life. Recently his condition necessitated the insertion of a tracheostomy and support of a ventilator, and the Chronic and Complex Airway team were determined to get him back home to Forbes as soon as possible, avoiding the typical year-long admission that historically follows this type of intervention. Together with the support of dedicated clinicians at his local Forbes and Orange Hospitals, the SCH team were able to get Corey home in April this year, in just four and half months. Lead by Beckie Petulla, SCH’s Clinical Nurse Consultant Paediatric Complex & Artificial Airways, and together with Jessica Gleeson, CNS2 Kids GPS Care Coordinator, and Aoife Hyland, CICU & Respiratory Team Lead Physiotherapist, an intensive tracheostomy care training plan was developed and tailored specifically to Corey’s needs.

“Our ultimate goal was to provide a week of face-to-face training sessions in Orange and Forbes to support, educate and empower Corey’s local teams to care for him confidently, and to keep him where he belongs, at home with his family”, says Beckie, Clinical Nurse Consultant, Paediatric Complex & Artificial Airways.

An incredible 118 nurses, doctors, allied health, ambulance staff and carers from Orange and Forbes attended the intensive training sessions, all dedicated to ensuring that Corey and his family would be well supported when they returned to their community. 

“We felt welcome from the moment we arrived in Orange, everyone wanted the training and to feel equipped to support Corey. At first, people were understandably overwhelmed by all the equipment required to care for Corey, but at the end they felt empowered and they knew they could do it. Watching that shift is a career highlight for everyone on the SCH team.”

Resource packs were created for Corey’s new care teams detailing important medical information. As Corey’s ability to talk is limited, the packs also included valuable personal information such as what matters to him, his interests, and helpful tips from his SCH child life therapist on how to engage him during certain procedures. These personal details about Corey allowed his new teams to really connect with him in the best possible way, and have helped to lay the foundations of strong relationship with Corey and his family moving forward.

Jessica, CNS2 Kids GPS Care Coordinator says coordinating Corey’s transfer of care was a huge undertaking for the SCH team, but it couldn’t have been done without the assistance of Dominique Spork, Paediatric Clinical Nurse Consultant for Western LHD, Integrated Care Directorate, and Keith Nkazana, Paediatric Nursing Unit Manager, Orange Base Hospital

Dominque says after the week of training, and with Corey settled, she was sad that the experience was ending because the team work between SCH, Orange and Forbes, and Corey’s external carers had been so amazing.

“When you look at NSW Health’s core values we have ticked every one off for Corey, especially collaboration. It has been such an incredible outcome, but most of all I know we have increased the skill level and knowledge for our staff.”

Aoife, Physiotherapist at SCH says that with complex kids like Corey, nursing and medical training needs are generally the focus of education role outs but this was a unique opportunity to enhance the education by delivering a multi-disciplinary education package, “There is so much that physiotherapy can contribute in terms of keeping the lungs clear, using the cough assist machine, and trying to prevent further respiratory infection. I felt honoured as an allied health member to be a key part of this special effort to get Corey closer to home.”

Beckie and the Chronic and Complex Airway team are proud to say that this experience has strengthened working relationships between SCH and clinicians in Corey’s local health district, “The groundwork has now been done for patients like Corey into the future both at SCH and local hospitals around the state thanks to this collaborative effort. Ultimately the best place for a child is home and if SCH can support local services to facilitate this, this is what we need to be doing.”

Beckie and the team, would like to acknowledge the teams and departments across SCH that supported this incredible effort including our Children’s Intensive Care Unit, the Ear Nose and Throat and Respiratory teams, General Paediatrics, and all of the many nursing and allied health staff members involved in Corey’s care.

*photo taken before current COVID-19 lockdown