The American Association of Critical-Care Nurses (AACN) recently conferred a gold-level Beacon Award for Excellence in the pediatric intensive care unit (PICU) at CHOC Children’s Hospital. This is the third time CHOC has earned the gold-level distinction.
The Beacon Award for Excellence recognizes unit caregivers who successfully improve patient outcomes and align practices with AACN’s six Healthy Work Environment Standards. Units that achieve this three-year, three-level award with gold, silver or bronze designations meet national criteria consistent with Magnet Recognition, the Malcolm Baldrige National Quality Award and the National Quality Healthcare Award.
“The Beacon Award for Excellence recognizes caregivers in stellar units whose consistent and systematic approach to evidence-based care optimizes patient outcomes,” explains AACN President, Clareen Wiencek, RN, PhD, ACNP, ACHPN. “Units that receive this national recognition serve as role models to others on their journey to excellent patient and family care.”
CHOC’s PICU earned a gold award, the highest designation, by meeting the following evidence-based Beacon Award for Excellence criteria:
leadership structures and systems;
appropriate staffing and staff engagement;
effective communication, knowledge management, learning and development;
evidence-based practice and processes; and
“This award is further validation of our entire pediatric intensive care team’s dedication to the highest standards of patient safety and care,” says Melanie Patterson, RN, MHA, DNP, vice president, patient care services and chief nursing officer, CHOC Children’s Hospital. “We are entrusted with caring for some of the sickest and most medically fragile patients, and our goal is to deliver the best possible outcomes for them and their families.”
The physicians, nurses, staff and patients that make up the CHOC Children’s healthcare community have much to be thankful for this year. In addition to opening our Mental Health Inpatient Center and expanding our Primary Care Network, we’re grateful to be able to offer best-in-class care to kids in Orange County and beyond. A few members of the CHOC community share what they are most thankful for this year.
Kimberly Chavalas Cripe, president & CEO, CHOC Children’s
“This Thanksgiving – and always – I am grateful for our mighty brigade of physicians, staff, volunteers, donors and community members who are committed to keeping childhood alive and well. The holiday season is a time of wonderment for kids, and illness or injury shouldn’t dim the brightness of the holidays for our patients and their families. Thank you to our team for working tirelessly to preserve the magic of childhood.”
Chris Furman, chairman, CHOC Children’s Board of Directors
“This year, I am thankful for the opportunity to serve as the incoming chairman of CHOC’s board of directors. Our entire board is dedicated to furthering CHOC’s mission to nurture, advance and protect the health and well-being of children in Orange County and beyond. We are honored to support CHOC’s passionate team of physicians and staff and privileged to play a part in bringing world-class care to children and families.”
Cynthia Neiman, chief marketing officer
“There are so many things that I am thankful for this year! I am so thankful to be working here at CHOC alongside a “mighty brigade” of passionate clinicians, associates, and my amazing team who are all dedicated to preserving the magic of childhood. I am thankful to wake up every morning and do something that I love with people who have a shared mission. This year, I am especially thankful for my family and that all of us will be together in the same city to enjoy the holiday together.”
Dr. Maryam Gholizadeh, pediatric general and thoracic surgeon
“I am grateful for many blessings in my life. To name a few: I am thankful to be part of CHOC Children’s, one of the best children’s hospitals, and have the opportunity to do what I love the most, and that is to take care of children. Second, it is truly an honor and privilege to be a surgeon and have the trust of families with their most precious gifts on earth, their children. And finally, I am grateful for the support of my wonderful colleagues and all the staff at CHOC Children’s that allows me to do my job the best way I can.”
Amanda Webb, emergency department charge nurse
“I am thankful to serve children and families who come to the Julia and George Argyros Emergency Department at CHOC Children’s. It’s my privilege to be a source of calm and care for our patients and families during a daunting and scary time. I’m also so grateful to work with a truly transformational leadership team, and alongside dedicated and compassionate staff who make up the best group I’ve collaborated with during my career.”
Annette and Richard Symons, CHOC Champions
“I am grateful that CHOC has given me the opportunity to build upon my parents’ legacy of giving. CHOC helped my husband and me realize our desire to establish a spiritual care endowment—walking alongside us throughout the entire process, putting our philanthropic goals first and working hard to make everything easy for us. As a long-time member of the Small World Guild, I’ve been fortunate to see the incredible healing and support that CHOC provides children and families. I’ve come to find that the more you get involved at CHOC, the more you learn just how amazing it is.” -Annette Symons
Dr. Charlie Golden, executive medical director, CHOC Children’s primary care network
“With each year that passes, all of us experience the many trials and blessings of life. As a father and a husband, I am truly thankful for my family, and am reminded every day by them of the true purpose of life. As a physician, I am thankful for my patients and staff, as they enlist me for advice, confide in me their most sacred concerns, and place their trust in me. As a physician executive, I am thankful for the skilled team of physicians and leaders that I work with who share a vision and work tirelessly to provide the highest quality healthcare to all children. Finally, I’m so very grateful for CHOC Children’s, and our vision to be a leading destination for children’s health.”
Christian, age 8, patient
“I’m thankful for my dad for making my favorite foods. I’m thankful for my mom because when I can’t sleep she climbs in my bed and lays with me until I fall asleep.”
Bernabe, Christian’s dad
“Thank you to every doctor and nurse for the special care they provide to Christian. I’m thankful for Jody, an oncology nurse practitioner because my son lights up whenever she comes into his room to check on him. Jody and Christian have a special bond.”
Mallorie Boeing, pediatric intensive care unit registered nurse, CHOC Children’s at Mission Hospital
“This year and every year for the past four years since I became a member of the CHOC organization, I am thankful for my CHOC Children’s at Mission Hospital family. From our unit assistants, electroencephalogram (EEG) techs, child life specialists and volunteers, to our doctors and nurses both at CHOC Mission and Mission Hospital, I am thankful to be a part of such an amazing and passionate team of individuals. I am especially thankful this year for CHOC’s ability to provide tuition assistance while I obtain my master’s degree and for creating such a fun and positive work environment. I am also thankful for CHOC’s continued dedication to providing safe, high-quality, patient-and-family-centered care to all of Orange County’s smallest residents.”
Dr. Kelly Davis, pediatric sports medicine specialist
“I was a resident at CHOC several years ago and am so thankful to be a part of the CHOC community again. I am thankful for all of my colleagues who help me continue to grow and learn as a physician. I am thankful for my patients who are the young budding athletes of the future. They entrust me with their pains and concerns and allow me to care for them and help them stay healthy while they achieve their sports dreams. Being at CHOC as a resident taught me so much and significantly shaped the doctor that I am today. I am most thankful to now be able to give back and pass on my love for teaching and our healthcare system to the next generation of doctors.”
Dr. Joffre Olaya, pediatric neurosurgeon
“I am so grateful for the privilege of working at CHOC Children’s and the chance to be part of a premiere clinical team within CHOC’s Neuroscience Institute. I take pride in working alongside such an incredible team of healthcare providers who understand that we care for the most vulnerable population. Shouldering this responsibility propels us to strive to deliver the best possible care to our patients facing neurological disorders. I’m humbled that parents entrust us every day with their children’s medical care.”
Danielle Frausto, registered nurse, neonatal intensive care unit
“CHOC has given me the opportunity to do what I love most. It is an honor to come to work every day and take care of our fragile patients.”
Lisa Schneider, nurse manager, mental health inpatient center
“I am very thankful for everyone who has warmly welcomed me into the CHOC family and also for CHOC’s dedication to pediatric mental healthcare. This is the first organization that I have encountered that is so passionate about de-stigmatizing mental illness and prioritizing mental health prevention, recognition and treatment in children. We are truly impacting the children in our area and are setting a higher standard for mental health care across the country.”
Lily’s big sister, Makenna loved her before she was even born. She was actually the one who chose Lily’s name. Their bond only grew stronger when Lily was born with a rare chromosomal abnormality requiring specialized treatment and extra help at home.
“Even though Lily is different than Makenna and her brother, Ethan, they just see her as their sister,” says mom, Danielle. “They’ve helped Lily learn sign language and practice pronouncing words.”
Lily’s entire family has been involved in her care from day one. Makenna, age 11, would regularly tag along to Lily’s physical and occupational therapy sessions. She was keen to learn how she could help take care of her sister. She watched closely as physical therapist Cathy Lopez taught Lily how to move her body, and occupational therapist Lauren Newhouse taught her how to eat solid food (her favorite is avocado).
Seeing the way CHOC’s rehabilitation services team cared for Lily and the progress she made in therapy inspired Makenna to give back.
When Makenna’s school hosted a fair for students to showcase causes important to them, she chose to honor CHOC. She and a few friends watched YouTube videos to learn origami and created dozens of animal and emoji-themed bookmarks. She quickly sold out of them and donated the proceeds to the rehabilitation department at CHOC.
“Raising money for CHOC is the least I can do to thank them for taking such good care of my sister,” Makenna says. “Whenever we are there for an appointment, all the doctors, nurses, therapists and security guards are so nice to us.”
Organizing this fundraiser has inspired Makenna to continue her philanthropic streak.
“It was feels good to do it and it was so easy. It makes me want to do more to raise more money for CHOC,” she says.
Lily’s diagnosis and early days
When Danielle and her husband, David, found out they were expecting their third child, they were thrilled. A few months into Danielle’s pregnancy, a blood test showed that Lily had Turner Syndrome, a genetic condition affecting a female’s growth and fertility. That turned out to be a false positive, but a follow-up amniocentesis correctly diagnosed Lily with Mosaic Trisomy 12, a rare chromosomal abnormality about which not much is known.
Lily was born full-term via C-section at a local hospital. Immediately after birth she had trouble breathing and turned blue, and she was quickly whisked away to that hospital’s neonatal intensive care unit (NICU).
Lily needed a ventilator to help her breathe. She also required use of a CPAP, also known as continuous positive airway pressure, which helped keep her airway open. Danielle pumped her breastmilk so Lily’s care team could nourish her through a feeding tube.
Just outside the hospital, CHOC geneticist Dr. Neda Zadeh was starting to make her way home for the day when she heard about Lily’s condition.
“Dr. Zadeh was on her way out, but she turned around and came back to the hospital to run more tests and get a better idea of what was affecting her,” Danielle recalls. “Dr. Zadeh is amazing.”
In the first few days of Lily’s life, her parents weren’t sure if she would make it or not. When she was 3 days old, she was transferred to CHOC’s NICU for a higher level of care.
Lily spent the next 24 days in the NICU. When she learned how to breathe and eat on her own, she was ready to go home for the first time.
While the family spent much of their daughter’s first month in the hospital, NICU nurses made sure the family didn’t miss out on their first holiday together — Father’s Day. With her nurses’ help, Lily created a special Father’s Day craft for David using her footprints.
These days, Lily sees a mighty brigade of pediatric specialists at CHOC on a regular basis. Although not much is known about her Mosaic Trisomy 12, her care team remains fully committed to ensuring she is safe and healthy. In addition to Dr. Zadeh, Lily is under the care of neurosurgeon Dr. William Loudon, endocrinologist Dr. Timothy Flannery, and otolaryngologist Dr. Nguyen Pham. She also sees a neuro-ophthalmologist at UC Irvine.
Danielle is proud of the progress Lily has made during therapy at CHOC and seeing how that progress sparked Makenna’s giving spirit makes her proud as well.
“Makenna probably doesn’t realize this, but Cathy and Lauren at CHOC really cared for our entire family, not just Lily,” Danielle says. “The entire rehabilitation team at CHOC was incredibly supportive to our entire family. They were the weekly and sometimes daily reminders that we could do it. They impacted our entire family in a way that words simply cannot express. When we look back on Lily’s first years, they are in our memories and always will be!”
Serving patients and families of Pediatric & Adult Medicine (PAM), a part of the CHOC Children’s Primary Care Network, for nearly 25 years would give anyone a unique perspective of CHOC.
But for Rosie Echevarria, a front office administrator, that understanding goes even deeper. After all, both of her children required an extra level of care in CHOC’s neonatal intensive care unit (NICU) when they were born decades ago.
“When I joined PAM, I didn’t have children at the time, but I knew that when I eventually started having kids, that they would be born at St. Joseph Hospital in Orange,” Rosie says. “That way, they could be right across the street from NICU if anything were wrong and they needed extra care. A lot of our patients had been treated at CHOC, and I just sort of knew that if my future babies went to CHOC, that everything would be OK.”
Rosie had no way of knowing that she would indeed become a NICU mom.
Clarissa, Rosie’s eldest child, was born at St. Joseph via C-section at 29 weeks gestation. Rosie stayed behind to recover from surgery while Clarissa was quickly transported to CHOC’s NICU. Facing a premature birth and the unexpected hospitalization of her first baby left Rosie feeling scared and worried.
“My husband stayed by our daughter’s side, and when they got to the NICU, the doctors explained to him everything that was happening to our daughter,” Rosie says.
Rosie was able to join her daughter in the NICU the next day.
“Once I was transported up to the NICU in my wheelchair, the nurses reassured me that they would take care of my baby night and day, and that I could visit anytime,” Rosie says. “They explained everything that would happen, and what all the monitors she was hooked up to were for—I was included in every decision and considered part of the team.”
Rosie fondly recalls the personal way that Clarissa’s team of NICU nurses cared for her daughter 20 years ago.
“Because she was so little, she couldn’t really open her eyes—so her nurses made her a little eye mask with eyelashes and eyes,” she says. “It was so cute!”
Clarissa spent almost three months in the NICU.
“The care she received was absolutely the best, from day one to release date,” Rosie recalls. “The doctors were wonderful as well. I think my daughter had the very best doctor because I would get a call every single time anything would happen, or if I needed to get to the hospital right away.”
During that time, she needed two blood transfusions. Before she could be discharged, CHOC nurses trained her parents on how to care for her using equipment she took home, including an oxygen tank and an apnea machine.
“They explained everything to me and reassured me that there was no need to be afraid—that Clarissa wasn’t in danger,” Rosie says.
A few years later, her son, David, was born at 32 weeks gestation at St. Joseph Hospital, and was immediately transported to CHOC’s NICU. Since Rosie already had a little one at home, she couldn’t spend as much time with her son in the NICU as she had spent when she was a first-time parent.
“I was very sure the nurses would take really good care of him because I had already experienced it the first time,” she says. “I was never in fear that my child wasn’t taken care because I know the level of care that the CHOC NICU provides.”
David stayed in the NICU for two weeks before he was ready to go home — although his mom recalls that at that time he was never quite ready to wake up.
“He loved to sleep! He would never wake up. So, when we were getting discharged, we went home with a monitor and caffeine that staff showed me how to use and administer.”
These days, Clarissa is studying forensics at UC Irvine. She loves to travel and go to concerts with her mom. Clarissa lives with cerebral palsy and receives care from Dr. Samuel Rosenfeld, a pediatric orthopaedic surgeon at CHOC. David is a high school student who loves illustration and dreams of becoming an art teacher.
Because of their prematurity, both had eye surgery when they were younger. Both sister and brother have regular eye exams with Dr. David Sami, a pediatric ophthalmologist at CHOC.
“The three words that come to mind when I think of CHOC are: caring, loving and reassurance,” Rosie says. “Doctors and nurses provide such excellent care and treat their patients as if they were their own children. As a first-time mom, I didn’t know what to expect, but I was never in fear. CHOC made me feel like everything was going to be OK.”
A teacher years ago bestowed an apt nickname on Rylee Christe: Smiley Rylee.
“She’s a very social, happy child,” says her mom, Sara. “She got that name from her preschool teacher. It just stuck forever. She’s always smiling.”
But despite her happy disposition, Rylee had a big roadblock: frequent disruptive seizures. And Sara wanted nothing more for her young daughter than to enjoy her childhood without this burden.
In 2013, a pediatrician diagnosed a 4-year-old Rylee with complex partial seizures. Suddenly, Rylee’s mouth would twitch and cause saliva to bubble. She’d be unresponsive to questions. While the family awaited an appointment with a specialist, the seizures quickly increased in frequency, sometimes up to 30 a day.
One day, Sara knew she couldn’t wait any longer and took Rylee to an emergency department. An electroencephalogram, or EEG, detected abnormal brain activity, confirming the pediatrician’s diagnosis of complex partial seizures. Imaging also revealed a lesion on Rylee’s brain.
An odyssey to stop the seizures began. Doctors ordered multiple tests and prescribed several types of medications. But the seizures continued. They moved to another hospital and found some temporary relief, but the seizures began again.
Dr. Zupanc, who has worked with thousands of patients with epilepsy throughout her career, understood exactly how distressing an epilepsy diagnosis can be for families and how debilitating seizures can be.
“We had been through the woodwork trying to get to where we are now, to find the amazing doctor that we needed,” Sara says.
A plan at last
First, Dr. Zupanc ordered long-term video EEG monitoring of Rylee’s brain activity. Another round of imaging revealed another lesion, this time in the left frontal lobe.
Dr. Zupanc then worked to get Rylee’s seizures under control, trying two medications previous care teams hadn’t. After the seizures reduced to about one or two a night, the Christe family headed home.
Next, Dr. Zupanc set out to stop the seizures for good. It was clear though that Rylee would need more than medication. Dr. Zupanc raised the prospect of brain surgery.
“At first, I was hesitant to move forward because any mention of surgery for your child is terrifying,” Sara says. “But brain surgery? Come on.”
But Dr. Zupanc explained to the family that evidence shows more than 70 percent of patients with seizures may benefit from surgical intervention; that children respond and recover well from surgery because of the plasticity of their young brains; and that surgery should be considered sooner than later.
The family agreed to explore the option, moving forward with subsequent testing, exams and lab work needed to determine if Rylee was indeed a surgical candidate. After reviewing the results, a team of CHOC specialists agreed that she would benefit from surgery.
Next for the Christes was a brain mapping session at CHOC Children’s Hospital. During the procedure, Dr. Joffre Olaya, a pediatric neurosurgeon who is specially trained in epilepsy surgery, opened Rylee’s skull and placed an electrical grid on her brain. Later, Dr. Zupanc would record Rylee’s seizures to pinpoint the seizure focus. She also stimulated the electrodes on the grid to determine the location of Rylee’s motor area and speech and language center in the brain.
Three hours of testing confirmed Dr. Zupanc’s suspicion that Rylee’s seizures were originating from the left frontal lobe. The physicians were confident if Dr. Olaya removed the lesion there, the seizures would stop.
The procedure wasn’t without risks though. Drs. Zupanc and Olaya cautioned Sara that the surgery could leave her daughter with some impairments like a facial droop, speech problems and even some paralysis.
Sara and Rylee weighed the risks with the benefits of a childhood without seizures and decided to move forward. Three days later, she underwent a successful surgery with no complications.
Back to being a kid
After four days of recovery at the hospital, Rylee and Sara headed home. The next week, Rylee returned to school on an adjusted schedule and was begging her mother to use her roller blades and ride her bicycle.
Now, about six months past her surgery, Rylee, 9, hasn’t had a single seizure. She remains on medication, but it’s likely her dosing may decrease after a few years.
Life for the Christes has changed dramatically.
“Quality of life has improved so much for the whole family,” Sara says. “I can sleep at night. It feels like I haven’t slept in five years.”
And Rylee, who will likely remain on medication for the rest of her life with close following by her physicians, is in fourth grade and back to enjoying her childhood.
“She loves to dance and sing, and she can remember the words to every song she sings,” Sara says. “She loves to swim and ride bikes, and her favorite thing in the world is mermaids.”