For medically fragile kids, pandemic is extra scary. Valley Children’s provides care, comfort

For families with medically complex children, hospital visits can be ubiquitous.

“We’re at the hospital more than we’re at Starbucks,” says Amanda Kerr, whose 8-year-old daughter Norah has the rare brain malformation Dandy-Walker Syndrome, along with Spina Bifida, a heart defect and global hypotonia (decreased muscle tone) and other chronic illnesses.

That can be a scary proposition during the best of time, let along during a global pandemic.

Norah has visited Valley Children’s Hospital at least 100 times since the start of the coronavirus pandemic — for clinic and therapy appointments, labs and radiology. In fact, Norah and her 6-year-old sister Tessa haven’t really been to any place other than the hospital since March 2020.

But Kerr is OK with that.

“I feel more comfortable taking my kids to Valley Children’s than going to a store or back to school,” she says.

Patient, staff safety a priority

The visits have come with some changes in protocols.

To mitigate the risk of possible COVID exposure, the hospital limits traffic into and out of its facilities. Staff members who don’t work directly at the hospital or can work remotely aren’t allow on site.

For months, patients have been allowed to have just one parent or caregiver (and no siblings) with them for appointments and ED visits. Those rules were relaxed in late February to include two parents.

Those coming into the hospital have their temperature taken and other COVID exposure checks before they even get through security. Masks are required for everyone in all parts of the hospital, and a team of staff members patrol the building to make sure everyone is in compliance, including no masks slipping down under noses.

“Our number on goal is keeping our patients safe and keeping our employees safe,” says Dr. Karen Dahl, the hospital’s vice president of quality patient safety and medical affairs. That includes new personal protective equipment for staff members and enhanced environmental controls like air filtration.

For in-patient stays, patients are immediately tested and kept in isolation until the results are returned. Patients with planned procedures are tested prior to their appointments. Staff members can be tested almost on demand, Dalh says, and are tested if they experience symptoms or have been exposed.

Being a respiratory case, Norah has had five or six COVID tests, just in case Kerr says.

“Even if those symptoms are typical for you, they are not taking any chances.”

Valley Children’s was prepared and also proactive in dealing with the pandemic, Kerr says.

“They knew exactly what they were doing to keep their staff and patients safe,” she says, and didn’t have to deal with staffing or equipment shortages other hospitals experienced. It was doing PPE well before it was plastered all over the news.

Telemedicine services expanded

For the most part, care has continued uninterrupted.

During the first months of the pandemic, many of Norah’s in person appointments did get rescheduled. But the hospital was quick to pivot and expand its telemedicine services, allowing some of her clinic and other visits to be done remotely.

Healthcare providers have been conducting telemedicine at Valley Children’s for years, says Randy Guerrero, RN, and Director Clinical Partnerships and Telemedicine at the hospital. Originally, it was used to provide better access to the hospital’s pediatric subspecialists.

“The intent was to minimize travel for patients and their families,” Guerrero says.

Telemedicine allowed the hospital’s clinic in Madera to support outpatients in specialty care centers located in other parts of the Valley. It also improved efficiency for the specialists, who no longer needed to travel to those specialty care centers in person.

When the pandemic hit, the hospital minimized potential exposure to COVID-19 by limiting outpatient visits to its specialty and primary care clinics to those with “urgent” medical needs.

It rolled-out a telemedicine platform so that other patients could still see staff, only now virtually, in their homes.

So far, the hospital has provided training to more than 200 tele-providers, representing 24 pediatric specialty and eight primary care practices, and increased the total number of telemedicine appointments to 40 times that of pre-pandemic levels, Guerrero says.

That’s gone a long way to help doctors and parents prioritize visits, focusing on those that demand in-person attention, as opposed to issues that can be addressed remotely, Kerr says.

That means less people in the waiting rooms and shorter wait time for appointments.

“People aren’t having to resort to the ER when they can’t get into their doctor,” she says.

“I’ve never seen the ER so empty.”

Of course, the thing that makes Valley Children’s feel familiar for patients like Norah hasn’t changed.

“It’s not emotionally sterile,” Kerr says. The doctors and nurses still know who you are, even with masks covering faces.

“They still say hello. It’s just from a distance now,” she says.

As was the hospital’s annual Santa Clause, which was done remotely this year.

“We’re tried to continue some things we know are important for our emotional health,” Dahl says.

If anything, the pandemic has given the public a glimpse at what life is like for children like Norah.

“That is the daily life of a medically fragile family,” Kerr says, what with the mask wearing and hand washing and general precautions.

“I hopes it gives others a sense of compassion and empathy, and an appreciation for places like Valley Children’s.”

This story was originally published March 9, 2021 at 12:01 AM.