First telemedicine check-up for ventilator-dependent patient improves access to specialty care
Actually, there’s very little that’s easy in 11-year-old Larkin Bish’s life, breathing or anything else.
But being seen by pediatric specialists became a lot less difficult for her family earlier this year, when Larkin became the first patient on a ventilator to be seen by telemedicine from Children’s Mercy’s Wichita Specialty Clinic.
Larkin, whose family lives about 20 minutes outside Wichita, has spinal muscular atrophy, a rare genetic condition affecting the part of the nervous system that controls voluntary muscle movement. She’s had a tracheostomy and has been on ventilator support since she was 2½ months old. She has Down syndrome and uses a feeding tube as well.
Needless to say, traveling with all the equipment necessary to ensure her safety is anything but easy, especially if it’s a three-hour ambulance ride on a gurney to see CM specialists in Kansas City.
But getting to CM’s Wichita Specialty Clinics? “A piece of cake,” relatively speaking, according to Larkin’s mom, Gina Bish. “The entire experience was quick and painless. All pro, no con.”
The Bish family’s experience further demonstrates telemedicine’s potential to provide care for patients far from Kansas City who otherwise might not have the opportunity to be seen by specialists, said Chad Stotler, Telemedicine Manager.
“For these families, it’s not just more convenient, it’s necessary,” Chad said, adding that he looks forward to a day when such visits can occur in the patient’s own home.
Follow-up from afar
Larkin’s family actually did bring her to Kansas City last year for in-person assessment. She receives routine care from her local primary care pediatrician – who comes to the family’s home to see her – but she had not been seen by a pediatric pulmonary specialist since Wichita’s only pulmonologist left town four years ago.
“Because it had been quite awhile since she had been seen by specialists, we needed to arrange a visit so all the relevant people – gastroenterology, neurology and others – could assess her current condition,” said CM Pulmonologist Alvin Singh, MD. For Larkin’s family, that meant nearly three hours in an ambulance each way – a trip that went relatively smoothly to Kansas City, but required dodging tornado warnings, failure of the equipment that allows her to cough and other issues on the way home.
“Traveling with these machines, worrying about battery life… you never know what will happen in a three-hour drive,” said Dr. Singh.
The technology-enabled follow-up visit, in contrast, went smoothly for all, thanks to thoughtful coordination with the team in Wichita, including Ashton Unrein, RN, BSN, CPN, Telemedicine Clinical Facilitator, Sandy Pickert, MPH, BSN, RN, CPN, Ambulatory Nurse Co-Manager, and Delores Ziegert, BA, RRT, AE-C.
“The ambulance picked Larkin up at our home and Sandy met us at the door and led us in a back way up to the floor,” Gina said. “You can imagine bringing her through a waiting room on a gurney would be quite a spectacle,” and possibly expose her to other illnesses as well.
“We saw her in our procedure room, which is big enough to accommodate all the people – mom, dad, the home health nurse - and equipment,” said Ashton, who facilitates a variety of telemedicine clinics in Wichita.
Dr. Singh, from his screen in Kansas City, was pleased with the result.
“Everything I need to do in clinic, I can do with telemedicine. The nurse puts the stethoscope on the patient’s chest, I put on earphones and can hear the heartbeat,” he said. “With a camera I can look through the ears, nose and mouth. I’m using technology to the fullest extent of my ability to provide good care.”
Telemedicine may also allow Dr. Singh and his colleagues to help more families. There are 12 other patients on ventilators in the region served by the Wichita Specialty Clinic, according to Liz Cook, MSN, RN, NE-BC, CM Telemedicine Clinical Practice and Training Manager. Liz led efforts to make a ventilator telemedicine clinic possible and has assessed the need in central and western Kansas as well as communities served by clinics in Joplin, Mo.
Elaine Harrington, MD, Larkin’s pediatrician in the Via Christi Clinic in Wichita, sees even greater potential. She makes home visits to quite a few children on ventilators in communities in and around Wichita, and welcomes the opportunity for her patients to be seen more often by pulmonary specialists without having to endure the rigors of a long trip.
“I can do routine pediatric care, but these kids really need a pulmonologist to see them every few months to keep them healthy and out of the hospital,” Dr. Harrington said. “And driving long distances for appointments can be a safety issue. Telemedicine is the way to go.”
As for Larkin, plans call for Dr. Singh to see her by telemedicine every few months.
“Her parents are on top of things, the team in Wichita is wonderful, and the technology allows me to see her on a more frequent basis to troubleshoot any issues, and see what changes may be necessary,” he said. “
“Telemedicine helps me help them a lot more easily.”
Learn more about how telemedicine technology is used at Children's Mercy.
Learn more about Children's Mercy Wichita.