Out of great tragedy, sometimes great good can come. Such is the case with Austin Simon, son of Tiffany Simon, MSN, RN, CCRN, whose passing away at the age of 15 months old sparked a program that promises to help save the lives of children across the country who suffer from medically complex conditions.project-austin-serving-the-special-needs-of-medically-complex-children

Born with a heart defect and undergoing a subsequent tracheostomy, Austin experienced a medical emergency when his tracheostomy was plugged. Simon and her husband called 911. When they arrived on the scene, they looked “terrified,” says Simon in an interview. Their EMS training had not prepared them for dealing with an infant with a plugged tracheostomy, and they resorted to bag-valve masking Austin, which was an incorrect procedure, as Austin didn’t have an airway above his trach. Tragically, Austin suffered a severe hypoxic brain injury and died after he had to be taken off a ventilator a few days later.

“This wasn’t just something that happened to my husband, Austin, and me,” says Simon. “This also happened to those paramedics that were on the scene. There wasn’t anybody that walked away from that situation feeling good or okay about it,” she says.

After her son died, Simon went to nursing school and wound up working in the same pediatric ICU at Children’s Nebraska in Omaha, where Austin was cared for for most of his life. There, she met Natalie McCawley, MSN, RN, CCRN. Years later, Simon worked as a trauma outreach coordinator at Children’s Nebraska, and McCawley served as transport outreach coordinator. McCawley had suffered her own loss, her niece Sydnee, who was diagnosed with stage four lymphoma at just six years old and passed away.

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Together, they soon realized that the paramedics and EMTs they worked with had quite a bit of discomfort in caring for children, especially those with special healthcare needs. Simon and McCawley thought, “Sydnee’s and Austin’s stories are just one of a few,” says McCawley, whose father was a volunteer EMT. “And so we finally looked at each other and said, if not us, then who? What are we doing to offer resources and training to the communities, keep these families at home, and allow them to be taken care of in their home communities?” says McCawley.

“We both decided that this was something that we needed to do not only for our patients but also for the medical communities that serve them,” says Simon.

Launching Project Austin

Started in 2015 at Children’s Nebraska, Project Austin provides a standardized care model for first responders and community emergency departments with patient-specific information, resources, education, and training. According to Simon, the eight-person Project Austin team identifies children who are patients at Children’s Nebraska and have complex medical needs. They then work with the family to create an emergency medical plan, including the EMS system and community hospital in that plan. The program serves over 2,000 children across eight states and partners with some 700 EMS departments.

“We’re trying to redefine what ‘healthcare team’ means and include that child’s local 911 system, EMS, and their community hospital,” says Simon, a supervisor at Project Austin. “Including them into that plan makes them part of the child’s healthcare team.”

“Our outreach is specific to EMS and the community emergency department,” explained McCawley, Project Austin program manager – external affairs. “With Project Austin, we provide education and training and very robust emergency medical planning within the home communities. We look at the resources within that community so we can work with the resources they have available.”

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For children with medical complexity, “It’s not if they’re going to have a medical emergency, it’s when they’re going to have a medical emergency,” says Simon. “It’s making sure that that team responding to them and that medical emergency is prepared and ready to care for them.” The results so far are impressive, including a 27% reduction in hospital admissions, a 23% reduction in ED visits, and a 50% decrease in overall hospital length of stay.

Going National

Simon says the team wants to expand Project Austin, which won an ANCC Magnet Prize last year, into a national collaborative. The goal is to “work with regional pediatric hospitals across the nation so that they can deploy Project Austin within their facility to assist other children with medical complexity as well as the EMS and community hospitals that serve them,” says Simon.

The emergency medical plan is a paper plan that parents, EMS, and emergency departments have on file. Project Austin is now converting to a QR code system via a web- and mobile-based application. Simon says that each child will be given a QR code that can be scanned to access that emergency plan.

“It takes a village,” says McCawley, “and that’s what we’re doing is bringing a village together to care for these medically complex kids.”

For more information, visit ProjectAustin.com or email [email protected].

Louis Pilla
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