Nemours prepares families to care for sick kids at home

Tracheotomies are performed on patients for a variety of conditions from upper airway obstruction to spinal injuries.

At Nemours Children's Health System's two hospitals, in Orlando, Fla., and Wilmington, Del., providers opt to insert trach tubes in patients so they are less frequently sedated and have more opportunities to be mobile.

But a trach tube needs to be meticulously managed. The tube needs to be frequently suctioned to clear mucus buildup. It also needs to be changed every few days, which requires knowing how to manually ventilate a person.

For children who are ready to leave Nemours but must still have a trach tube, the health system trains families during the inpatient stay on how to maintain the tube without professional help. That allows patients to leave the hospital sooner, lowers the cost of care and helps the hospital avoid costly readmissions.

“For parents, it creates a clear understanding of what are the things I can do at home, and the things I should seek care for,” said Dr. Shiva Kalidindi, medical director of Nemours Institute for Clinical Excellence. “It makes their life much easier.”

In 2017, Nemours trained 47 families how to handle and insert a trach tube. The health system requires that for each child, at least two caregivers are trained.

“Legally we are not supposed to work more than 16 hours a shift—you wouldn't expect a parent to do more than that, so the second caregiver's role is to step in and help the primary caregiver,” said Donna Tearl, patient and family educator at Nemours.

Caregivers can be anyone close to the child like a parent, a close friend or a sibling 18 or older.

The intensive training lasts for about six to eight weeks. During that time, family caregivers are taught how to handle the trach tube by practicing on their own loved ones with supervision from nurses. The training usually begins four to seven days after a child has the tracheotomy. Nemours has nurses teach caregivers and has incorporated that duty into the nurse workflow so they have the time to devote to it.

Nemours also recently began to give families educational materials about tracheotomies and what to expect before training begins. This came after Nemours received feedback that caregivers didn't feel informed enough about how “huge an undertaking” the training is until after it had already begun.

Each week of training involves about 12 hours of instruction over three days. And for one day, the caregivers are in charge of their loved one's care for an entire 24-hour period at the hospital. The family caregivers learn how to suction the trach tube, manually ventilate their child, change the tube, properly use oxygen tanks and perform CPR.

After many weeks pass and it's apparent the child will be ready to go home soon, the program culminates in a final training session in the Nemours simulation lab. The lab helps caregivers prepare for what it will be like at home if an emergency situation strikes. A mannequin is used, and it's equipped with technology to signal various problems like difficulty breathing and distress.

A number of life-threatening circumstances can occur for patients with a trach tube. It can partially or totally come out or become blocked with mucus. Tube changing can also be deadly if not done correctly.

Some caregivers don't witness emergency circumstances until they are home with their child. “Learning it hypothetically through simulation adds great value,” Tearl said.

The Nemours training experience came in handy for Bradlee Whitson, the parent of a Nemours patient born in 2015 with an underdeveloped lung. About a month after he brought his daughter home, her trach tube became blocked and the child couldn't breathe.

“We put into practice everything we learned (at Nemours). The adrenaline was flowing, but we kept things stable until further help arrived,” Whitson said. “We couldn't afford to freeze.”

Nemours also uses its simulation labs for other purposes. The health system hosts training sessions to give school nurses hands-on practice for various high-risk situations like a student having a seizure, an allergic reaction or an asthma attack.

Nemours trains nurses from schools across Florida, one of six states in which the system's facilities are located. “The training has a huge impact on the child's life and the school,” Kalidindi said.