Beating COVID-19 and MISC-9: Matthew’s story

When 20-year-old Matthew came down with a mild case of COVID-19 before the holidays, he thought it had run its course. He didn’t expect to end up with MIS-C and in the hospital – much less, the one where his mom had worked for 15 years.

CHOC patient Matthew with his mother, Tiffani, a longtime CHOC employee.

Matthew’s mom, Tiffani, was a clinical dietitian at CHOC at Mission Hospital for most of that tenure before recently transitioning into a program manager role with The Sharon Disney Lund Medical Intelligence and Innovation Institute (MI3). Having spent many years working at patients’ bedside across many units at CHOC at Mission, Tiffani was already very familiar with CHOC’s practices, physicians and the environment of care, but when her son became critically ill, her role was solely that of a mom.

“When you are the parent of a sick child — whether he is 2 years old or 20 years old — you realize how truly dependent you are on the care team and must trust them to provide the solutions you can’t,” she says.

Positive for COVID-19

In December, Matthew tested positive for COVID-19. He had mild symptoms and quarantined for two weeks, spending Christmas apart from his family. Matthew got a negative COVID test in early January, and later tested positive for antibodies. He thought his illness was behind him and was making plans to donate convalescent plasma to help others fighting COVID.

The day after his antibody test, Matthew came down with a high fever. When that was followed by the quick onset and rapid progression of nausea and gastrointestinal symptoms, he headed for a local urgent care, which resulted in negative rapid flu and COVID tests.

A few days later he felt worse, so Tiffani took him to a local emergency department where he received fluids and a work-up. He was discharged, but Tiffani’s intuition and clinical background made her suspicious something else was going on. Dr. Antonio Arrieta, CHOC’s medical director of infectious disease, and Dr. Jacqueline Winkelmann, a pediatric hospitalist, were consulted.

They were concerned that Matthew’s lab work and symptoms – which included inflammation – might be indicative of Multisystem Inflammatory Syndrome in Children, or MIS-C. At their instruction, Tiffani brought Matthew immediately to the Julia and George Argyros Emergency Department at CHOC Hospital.

“From the minute we arrived in the emergency department at CHOC, things were completely different. I was allowed to stay with Matthew. The limited visitor policy in effect due to COVID still allows for one parent to be at the child’s bedside in most cases,” Tiffani says. “At the previous emergency department we visited, which was an adult facility, I had to drop him off at the curb and hope for the best, and that he would be able to advocate for himself despite feeling so sick.”

MIS-C diagnosis

By this point, it had been nearly a month since Matthew’s original COVID diagnosis. Once at CHOC, Matthew was admitted and quickly diagnosed with MIS-C.

“The original emergency department we went to didn’t suspect MIS-C at all because of Matthew’s age,” Tiffani says. “He is 20, and typically MIS-C affects younger kids, but CHOC was on high alert because of the increasing cases in the community. They saw beyond the typical case presentation and evaluated his labs and clinical status and found the rare case immediately.  I am so grateful we were able to receive Matthew’s care at CHOC.”

Finding answers and a treatment plan at CHOC

MIS-C can affect young adults up to age 21. It causes inflammation in blood vessels throughout the body due to a storm of reactions by the immune system. MIS-C is a relatively new syndrome that generally appears in people who have recovered from COVID-19.

A care team comprised of more than a dozen doctors from seven specialties, plus dozens of nurses, cared for Matthew in what would end up being a weeklong stay at CHOC. Those specialties included infectious disease, rheumatology, hematology, intensivists, hospitalists and cardiology. His pediatrician, Dr. Eric Ball, part of CHOC’s Primary Care Network, was updated and consulted as well.

Pharmacists at CHOC ensured that Matthew received the IVIG that he needed. High dose IVIG, or intravenous immunoglobulin, helps the body modulate inflammation . Matthew also received anticoagulants to reduce the risk of blood clot formation.

“We felt very calm and secure about the plan. Every specialty that was consulted was an active participant in Matthew’s plan of care,” Tiffani recalls. “The first night was really hard for us because Matthew’s blood pressure wasn’t stable, but we knew the care team was in close contact with the pediatric intensive care unit and would transfer Matthew there if he needed a higher level of care.”

Since MIS-C can cause inflammation in the heart and with his very low blood pressures, Matthew was ultimately transferred to CHOC’s cardiovascular intensive care unit. He began receiving high-dose IV steroids and monoclonal antibodies under the care of Dr. Andrew Shulman, a CHOC rheumatologist, in order to further reduce inflammation.

Part of the care team

The early days of Matthew’s stay at CHOC are a blur to him, but he does remember doctors involving him in his care plan when he felt well enough for those conversations.

“I remember Dr. Arrieta telling me about the medicine and treatment I would receive. He said they have other tools in their toolbox, but he hoped they didn’t have to use them,” Matthew says. “I’m older than some of their typical patients, and I appreciated that they respected me as an adult. All my doctors had a great bedside manner. Every single doctor made sure I knew what was going on, and that was important to me.”

Despite her history as a longtime CHOC employee, Tiffani knew the high level of care her son received wasn’t simply because she was part of the CHOC family.

“Everyone at CHOC receives this level of care. We didn’t get special treatment because I work here,” Tiffani says. “In clinical settings we cannot always guarantee results, but the team strives to get the best outcome, using their collective skills, and everyone goes above and beyond.”

Tiffani did feel, however, that she had a big team rooting for her and Matthew behind the scenes.

“My colleagues from 15 years at CHOC checked in on us all the time, both virtually and physically on the unit,” Tiffani recalls. “Their support meant the world to me.”

Turning a corner

Matthew started to turn the corner almost as quickly as he got sick.

“It was miraculous,” Tiffani recalls.

Once Matthew started to feel better and more lucid, one of the first things he told his mom was how much he appreciated that everyone at CHOC cared so much about him getting better.

“Even though he had been so sick, he remembered that the person who cleaned his room knew his name, and the food service worker delivering his meals said she hoped he enjoyed his food and that it would make him stronger,” Tiffani recalls.

Matthew started connecting with his clinicians as well. As an electrical engineering student, Matthew was interested in the inner workings of the electrical circuits in his EKG – or electrocardiogram, which records the electrical signals from the heart to check for various heart conditions. The technician who performed Matthew’s EKGs would explain everything she was doing and how the machine worked. They also discussed how to improve the technology and what future devices might look like.

Although Matthew is still committed to becoming an electrical engineer someday, he took a special interest in healthcare after his experience as a patient. Even though he doesn’t want to become a clinician, he does see how he can contribute to advancing pediatric medicine with his coding and engineering skills. He has applied for CHOC’s MI3 Summer Internship Program, and hopes to work with Dr. Anthony Chang, CHOC’s chief intelligence and innovation officer, on data science and innovation projects.

A special gift from his care team

As Matthew continued to get better, and closer to going home from the hospital, his care team wanted to send him home with something to remember his journey and be a symbol of their continued support.

Matthew holds a heart pillow signed by the team at the CHOC Heart Institute.

It’s a tradition for heart patients at CHOC to receive a red heart-shaped CHOC Heart Institute pillow, signed by all their caregivers, when they finally go home.

“This gift is not only endearing to the patient, but symbolic to the parent,” Tiffani says, “These caregivers are tattooed on our hearts for their heroic efforts to save our kids.”

While Matthew’s care team closely monitored his status and lab reports as indicators of when he would be able to go home, his mom was noticing signs he was feeling better, too.

“I was encouraged when I saw the whites of his eyes again, as they had been pink before when he was really sick,” Tiffani says. “And when I took a photo of him and could see his cheekbones that was significant because it meant the medicine was removing the puffiness and inflammation from his body.”

A journey for both patient and Mom

While this health journey was Matthew’s, it affected his mom as well.

Matthew and Tiffani stand outside the doors of CHOC’s hospital in Orange.

“As a CHOC employee, I’ve long admired the talented doctors, nurses and other clinicians for the excellent care they provide. I am humbled to call them my colleagues,” Tiffani says. “As a parent, I am so thankful we have such a wonderful children’s hospital to care for kids in our community – whether they be 20 days, 20 months or in our case, 20 years old.”

A week after Matthew was admitted to the hospital, he was well enough to go home. Since MIS-C is a new condition, little is known about its potential long-term effects. Matthew will remain in the care of CHOC cardiology, infectious disease and rheumatology, plus undergo regular lab work to monitor his health.

Matthew also decided to join a research study led by Dr. Arrieta, which is looking at MISC-C and its long-term effects.

“I kind of look at it as I just overcame this new disease and joining the research study isn’t a lot of trouble for me. So, if I can help the doctors help other people, then of course I’ll do it,” Matthew says.

These days, Matthew is feeling a lot better. He is improving every day and working to get his strength back but is avoiding exercise at the advice of his cardiologists.

Tiffani is back at work, with a renewed sense of appreciation for CHOC.

“I love working at CHOC, but because it is a clinical setting, I don’t get to take my kids to work with me and show them what I do,” she says. “I have often told them about how special the team is. They have seen me go back to work late at night to help a family or answer a doctor’s call on the weekend. So, when Matthew got sick, I needed my work family to show up for me, and they did. Now the whole family understands why those of us that work at CHOC, do what we do —because every family deserves this type of care. We didn’t receive special care because I work at CHOC, we received special care because of CHOC.”

COVID-19 safety sticker doodle art delights CHOC patients

It’s a busy Friday morning on CHOC’s Orange campus, and a steady stream of staff, young patients and their parents make their way to a COVID-19 screening station.

After answering questions about COVID-19 symptoms and possible exposures and have body temperatures 100.4 degrees or lower, patients and their guardians who clear screening are asked to place a small round sticker on their upper body before they head to their appointments.

The stickers are a different color every day, and they tell others that their wearers have no COVID-19 symptoms or exposure. This screening process is one of a host of processes and procedures in place to ensure CHOC’s facilities are safe for patients, families, staff and physicians.

These other safety measures include daily health screenings for staff; masking and increased personal protective equipment when necessary; physical distancing practices; enhanced cleaning practices; and COVID-19 vaccination for staff and providers.

Health screenings are conducted by members of the CHOC team, and during slower stretches of their shifts, many of the screeners have taken to adding kid-friendly doodles to the small circular stickers worn by patients and families.

Balloon hearts. Bear paw prints. Lollipops. Dinosaurs. Whales. Popsicles. Elephants.

The list goes on.

An example of the doodle art decorating screening stickers at CHOC

And while far from professional renderings and just a small gesture, the drawings cheer up young patients who sometimes might feel scared about visiting the doctor.

“I really love the dinosaur sticker!” one girl declared before heading to her appointment.

Madison McCracken, an EMT and emergency department tech, has been a CHOC screener for two months.

“We are defenders of childhood,” Madison says. “While going to the doctors might be scary, drawing on little dots is one way we can defend childhood and have fun.”

Winnie Le, a clinical nurse and supervisor of the screening program, oversees the 50 to 75 screeners who sign up for shifts in six-week schedules and are stationed at a handful of locations throughout the Orange hospital campus.

“I’m glad to see that screeners are getting creative with their skills,” Winnie says.

Spruced-up stickers line a table at a screening station, where staff, patients and families are checked for COVID-19 symptoms and exposure.

Chloe Parise has been serving as a screener for nearly six months.

“Drawing on the stickers is important to me because even drawing something as simple as a smiley face can brighten someone’s day,” she says. “I didn’t realize how much of an impact it was making until some coworkers were telling me how excited the kids were about the stickers.

“It may not seem like it at first, but a drawing on a sticker can help focus on the positive side of things, and parents can forget the stressful reason their child is at the doctor’s for just a second and smile at the pizza doodle that someone made.”

When Chloe first started drawing on stickers, she noticed patients chose a sticker with a doodle over a blank one every time.

“So, I started drawing smiley faces, muffins and tacos because those were things I loved to draw on my homework when I was in high school,” she says.

“The next week, they wanted me to do it again, and people were commenting on how much they loved them. A security guard at CHOC gifted me some colored pens he wasn’t using not long after that, and I’ve been doing my best to draw on every sticker I can ever since.”

Other examples of sticker art at CHOC

Chloe’s screening co-worker was Davina Lance, a health information nurse who has been at CHOC for 31 years.

Davina says she loves working as a screener because she doesn’t see patients much during her regular duties, which mostly involve her performing triage over the phone.

“I used to get a little fix seeing the kids in the hospital hallways, but COVID has changed all of that,” Davina says. “So, I love being a screener.”

Davina bought a set of colored gel pens and keeps her designs simple.

“Believe me, I’m no artist,” she says with a laugh. “But when I’m going through the screening questions with a parent, the child is looking at which sticker he or she wants to choose. It happens every time.”

Davina draws doodles appropriate to the season or day. She went to town during the holiday season, and on the first day of March 2021, she drew bunny faces because spring and Easter are around the corner.

“It was also windy today,” Davina says. “So I drew kites.”

Learn more about what to expect when visiting CHOC’s campus and offices during COVID-19.

11 things you didn’t know about child life specialists

Every day, child life specialists from CHOC’s Cherese Mari Laulhere Child Life Department work across many areas of CHOC Hospital and CHOC at Mission Hospital, striving to normalize the hospitalize environment for patients and families.

“Normalizing” the hospital experience is the process of making things like medical equipment and procedures feel less strange or foreign. By doing this, patients and their family members can feel more at ease while at the hospital and will be able to focus on what is most important: feeling better.

In honor of Child Life Month, here are eleven things you may not know about child life specialists. You can also follow along for a day in the life of a child life specialist here.

  1. Child life specialists have bachelor’s degrees in child life, child development or a related field of study. They also have at least 600 hours of training in a child life clinical internship under the direct supervision of a certified child life specialist. Certified child life specialists have successfully completed the Child Life Professional Certification Exam.
  2. Child life specialists are embedded in many units and areas of CHOC, including: the pediatric intensive care unit (PICU); the cardiovascular intensive care unit (CVICU); the neonatal intensive care unit (NICU); the oncology, neuroscience, medical and multispecialty units; the Cherese Mari Laulhere Mental Health Inpatient Center; pre-operative services; the Julia and George Argyros Emergency Department at CHOC Hospital in Orange as well as the pediatric emergency department at CHOC at Mission Hospital ; radiology; and the Thompson Autism Center.
  3. Music therapy is one part of child life. CHOC’s music therapists use music to address physical, emotional, social and cognitive needs of patients of all ages. They can teach patients how to play instruments or even write songs to express themselves or cope with their emotions. Music therapy can help patients manage stress and fear and increase communication.
  4. Child life works with siblings, too. Since a patient’s diagnosis or health journey can impact the whole family, child life specialists can work with siblings to decrease anxiety surrounding diagnosis, treatment or hospitalization by using play and explaining treatment in language appropriate to a sibling’s age and development.
  5. At CHOC, you’ll find child life specialists embedded into virtually every area of the hospital. Outside of CHOC, you could work with a child life specialist in a variety of settings including dental offices, disaster relief, various nonprofits, military services for children, public health, hospice, pediatric summer camps and more.
  6. Child life is an evidence-based profession. This means that child life services – whether they be play-focused or to help a child psychologically prepare for treatment – are backed by research.
  7. Child life is not a billable service. That means that hospitals are not reimbursed for the care and services provided by child life specialists. CHOC recognizes the value child life brings to the patient and family experience and environment of care and funds their crucial work through donor support and other means.
  8. Technology is a key piece of child life’s work. They use virtual reality (VR) headsets, iPads, apps, and CHOC’s in-house radio and broadcasting station Seacrest Studios, to serve patients and families.
  9. Child life offers an abundance of programs for patients, siblings and families. These include everything from medical clowning in partnership with Healthy HumorTurtle Talk an interactive and entertaining show created by The Disneyland Resort; specialized therapeutic programs including music, art and pet therapy; grief support groups and more.
  10. CHOC’s child life team is big! The team is comprised of 50 people across two campuses. This mighty brigade includes child life specialists, music therapists, a special programs coordinator who coordinates visits and events, school teachers, a clinical education coordinator, an AYA program coordinator, activity specialists and a media programs coordinator.
  11. Child life specialists love celebrations. They regularly help patients and families in the hospital celebrate milestones like birthdays, holidays, graduations, prom, last chemo treatments, weddings and more.

Families giving back: Spotlight on BraveOnes Foundation

Rose & Jeff Kunze and Kendra & David Rosales have been longtime friends. They have seen each other through thick and thin, but never imagined having to support one another through the loss of a child.

Rose and Jeff’s son Hendrix  was admitted to CHOC’s neonatal intensive care unit (NICU) when he was born, due to genetic challenges.

BraveOnes family photo
Hendrix and his parents

Though Hendrix faced many health obstacles, it was clear that he was a fighter from the beginning. However, after a brave battle, Hendrix passed away from organ failure due to infantile spasms shortly after his first birthday. After he passed away, test results showed he had a very rare genetic disorder called OTUD5.

Creating a legacy

 What do you do when your best friend loses their child? This was a question Kendra kept asking herself. Both families were searching for a way to honor Hendrix. “You can either choose to be angry, upset and frustrated or you can choose to be grateful,” Kendra recalls. So, spurred by the love and gratitude they felt for Hendrix, the couples banded together to create the BraveOnes Foundation.

BraveOnes team photo
A BraveOnes Foundation team photo, taken before the COVID-19 pandemic.

The group has made it their mission to create childhood joy. The Kunze and Rosales families reflected on what brought hope during their darkest days while Hendrix was undergoing treatment and decided to bring some of that hope and joy to other children and families going through similar experiences. They have focused on two initiatives — funding a new neurology playroom at CHOC Hospital in Orange and providing meaningful meals to families.

 Providing childhood joy even during treatment

 During Hendrix’s short life, CHOC’s Neuroscience Institute — including to the first children’s hospital in California to be named a Level 4 epilepsy center — became his home away from home.

Because of Hendrix’s seizures, he underwent a lot of testing, which limited his ability to leave his hospital bed or room. Telling a growing child they have to stay in bed for extended periods of time can be challenging for clinicians and parents alike, and, can take a toll on families. The Kunze family had longed for a change of scenery for Hendrix, even if it was simply in another room where it would be safe for him to play.

Because of this experience, the BraveOnes Foundation’s first initiative was to fund a new neurology playroom. Through their extensive community and tribe of supporters, they quickly reached their fundraising goal of $120,000 for the specialty playroom. These funds will allow CHOC to expand the current playroom on the neuroscience unit, install wireless electroencephalogram (EEG) monitoring capabilities, offer enhanced sensory play with a tactile wall, install padded floors for added comfort for patients experiencing seizures, and purchase neuro-friendly toys for children of all ages.

“Imagine instead of needing to stay in your room for EEG monitoring, having a portable monitoring unit —you’re plugged into a backpack that allows you to move and continue your testing while also being in a room that has swings and sensory floors,” Kendra says.

Their vision for the playroom — planned in collaboration with CHOC experts — was to provide a space where children are not confined to their beds but can play and regain some of their childhood.

 Hope on a plate

Keenly aware of the struggle families face when they have a child in the hospital, and the sense of normalcy a catered meal can provide, the Meaningful Meals Program within the BraveOnes Foundation was created to provide dinners to families in CHOC’s neuroscience unit on a monthly basis.

Rose recalls a particularly difficult day when Jeff was at CHOC with Hendrix and the sense of relief he felt by receiving a free bagel. “He said, ‘I got a bagel and coffee and I feel like I can conquer the world,’” Rose recalls. “It was as if they had given him hope on a plate.”

Meaningful Meals quickly became a reprieve for families and relieved them of having to leave the hospital floor to get food so they could focus on supporting and making memories with their children. To date, BraveOnes has provided 1,500 meaningful meals to families at CHOC.

Creating joy during a global pandemic

Throughout the COVID-19 pandemic, BraveOnes started providing morale-boosting meals to hundreds of CHOC’s front-line caregivers.

The remodel of the neurology playroom is currently on hold due to the pandemic, but the BraveOnes Foundation still wanted to bring joy and light to children and families at CHOC. Through a generous donation during the holiday season, the group purchased enough Xbox gaming consoles for each patient room on CHOC Hospital’s fifth floor.

Hendrix’s legacy lives on as the BraveOnes Foundation continues to spread childhood joy.

Of her son’s legacy, Rose says, “I don’t ever think of Hendrix as a tragedy, but rather turning the unfortunate things he went through into joy. He showed us that there can be joy after heartbreak.”

A new tool to empower CHOC NICU parents

Parents of patients in the neonatal intensive care unit (NICU) at CHOC Hospital now have at their fingertips new technology to help them better understand, track and analyze data showing their baby’s progress while receiving care.

Launched at CHOC in fall 2020, NicoBoard is a tablet-based application that translates a stream of numbers pulled from their baby’s electronic medical record – data such as body temperature, weight gain and loss, feed volumes and more – into easily understood, simple sentences complemented by visual aids like graphs and charts.

Coupled with curated education and research materials, this helps parents better analyze trends and track progress, enhancing decision making and supplementing the detailed conversations they have with their baby’s care team at CHOC.

The system also provides parents with an outlet for journaling so they can document their baby’s experiences and milestones to remember later.

“At CHOC, we are fully committed to patient- and family-centered care, and families play an integral and active role in their child’s care plan,” said Jennie Sierra, NICU nursing director. “These tools build upon that commitment, further helping our families better understand complex medical data, stay engaged and ask important questions.”

A personal experience sparks an idea

The platform was developed by the father of two CHOC NICU patients who found himself searching for a tool that would help him better make sense of the data being reported on his children during their hospital stay.

Phil Martie’s twins, Bexley and Nicolette, were born in 2014 at just 25 weeks gestation. What would follow was a 110-day odyssey that would change Phil’s life forever.

After almost four weeks at another hospital, the Martie twins were transferred to CHOC. Upon admission, physicians there found that Nicolette had a hole in her intestine. Surgery was ordered immediately to repair the perforation, but Nicolette heartbreakingly passed away during a four-hour procedure.

baby bath
Bexley gets a bath as a baby

Bexley’s journey included battles with sepsis and a heart problem called patent ductus arteriosus, wherein a connection between the aorta and pulmonary artery that’s open during gestation fails to close shortly after birth and requires surgery. He also needed to grow, learn to eat by mouth and gain strength in his body.

Between the procedures, medications ordered, physical and feeding therapy, and day-to-day care in the NICU, Phil was struck by how much data and information he received about his children and how difficult it was to process that intel – especially while feeling the stress so common to many NICU parents.

“At CHOC, they gave all the access to data and information we ever wanted, but there’s still so much data that’s generated by the baby,” founder Phil Martie says

father and son
Phil and Bexley

That no tools seemingly existed to help solve this problem planted a seed for Phil, who had a background in business process improvement.

A desire to support a community of fellow NICU parents nurtured that seed, and a few years later, NicoBoard sprouted through Phil’s new company – Nicolette, named after Phil’s late daughter.

Today, Bexley is a happy and healthy 6-year-old. He was discharged from CHOC around his original due date without the need for medical equipment. Bexley likes to say he works at Nicolette, his dad says.

Bexley today
Today, Bexley is a happy and healthy 6-year-old

“I had this deep experience that lasted 110 days that included death and success – two different outcomes and textures,” Phil says. “The NICU experience is very textured. I’m in a unique position to do something – it’s a privilege.”

Another addition to a high-tech NICU

NicoBoard is among a host of advanced technology offerings in CHOC Hospital’s level 4 NICU, a 24,000-square-foot, state-of-the-art facility with 36 private rooms.

CHOC Hospital offers special units within the NICU to provide highly customized care for babies, including a small baby unit for children born between 24 and 28 weeks gestation or who weigh less than 1,000 grams; babies who need complex surgery; and babies who have neurological and cardiac concerns.