Augustina’s heroic battle with COVID-19

When Augustina, then age 13, visited her doctor in early June because she wasn’t feeling well, she had no idea she’d be rushed to CHOC Children’s Hospital and spend the next two months fighting for her life.

“My doctor told my dad that we needed to get to CHOC right away,” Augustina says. “I don’t remember much right after that.”

Originally admitted to CHOC with respiratory distress, Augustina was soon diagnosed with COVID-19. She was initially on high flow nasal canula for supplemental oxygen. Eventually that was escalated to a BiPAP machine — bi-level positive airway pressure — a machine that pushes much-needed oxygen into a patient’s airway. Her condition continued to worsen, and she was put on a ventilator to increase her oxygen levels. She was medically sedated for most of her stay in order to tolerate the ventilator.

“She was in critical condition for a long time,” says Dr. Jason Knight, medical director of the Josie Y.S. Lee Pediatric Intensive Care Unit (PICU) at CHOC Children’s Hospital. “There were two different nights during her hospitalization when we thought we might lose her.”

Dr. Jason Knight
Dr. Jason Knight, medical director of the Josie Y.S. Lee Pediatric Intensive Care Unit (PICU) at CHOC Children’s Hospital

During this extended hospitalization, Augustina’s father Jose visited her every day. Although his daughter was sedated, he spoke messages of support and encouragement to her.

“‘Mama, just relax. Everything is going to be OK’ is what I would tell her,” Jose says. “Even though she was asleep, I knew she could hear me.”

Indeed, when Augustina finally woke up from sedation, she thanked her dad – and her nurses, who had shared similar messages in her ear – for that encouragement.

“I couldn’t  talk, but I could still hear them,” Augustina says.

At one point, her condition improved thanks to proning and nitric oxide.

Eventually, Augustina underwent a tracheostomy, where a surgeon created an opening in her neck to place a tube into her trachea, allowing oxygen to enter the lungs. Once her tracheotomy was in place, she was more awake and the team was able to wean her ventilator support.

Once she was off her ventilator, the next step was rehabilitation, in partnership with CHOC’s physical therapists. The first milestone was sitting up in bed, then standing next to her bed, then walking around a little bit at a time. That process took several weeks.

Working through physical challenges and coming to terms with all she had been through was an emotional experience for Augustina.

Dr. Knight recalls one particularly anxious day for Augustina. Doctors wanted to perform a small procedure and because she was now coherent, she felt anxious – even though the procedure was relatively small.

Dr. Knight shares how that anxiety lead to a pep talk and bonding moment for the physician and his patient.

Dr. Knight: Why are you so sad?

Augustina: I’m sick and I have a trach and I’m not going to get better.

 Dr. Knight: Are you kidding me?

 Augustina: What do you mean?

 Dr. Knight: Augustina, you beat COVID! You were near death twice. One of those nights, I was on call and I thought we were going to lose you. COVID has killed hundreds of thousands of people and you were going to be one of them and you said no. It’s OK to be upset that you have a trach, but you also have to know that there’s a lot of people who weren’t always sure you were going to make it.

 From then on, Augustina’s entire outlook changed for good.

Augustina leaving the pediatric intensive care unit
Augustina leaving CHOC’s PICU.

Send-off celebration

After 57 days in CHOC’s PICU, Augustina was ready to be discharged to a local rehabilitation facility as a step toward going home. Wanting to make sure Augustina felt celebrated in her journey and give her the hero’s send-off she deserved, child life specialists from the Cherese Mari Laulhere child life department sprang into action. They created signs, organized gifts and planned a cheer tunnel filled with her favorite staff members holding streamers. The celebration brought tears to Augustina’s eyes.

Finally home

After spending a few weeks – and celebrating her 14th birthday – at the rehabilitation facility, Augustina finally went home.

These days, Augustina is back in school – albeit virtually for now – and happy to be surrounded by family, whom she missed during her hospitalization.

Augustina leaving CHOC's PICU
Augustina leaving CHOC’s PICU, pictured with her physical therapists and child life specialists.

The impact she made on CHOC’s PICU team remains strong.

“It’s important for people in the PICU to have victories like Augustina,” Dr. Knight says. “We don’t get victories all the time. There can be sadness and disappointment in the PICU. Everybody in the PICU knew Augustina and took care of her. Everyone knew how serious her case was. Our PICU team put a lot of time and effort and love into Augustina. It’s safe to say the entire PICU team is celebrating her success.”

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5-year-old Rayaan fights through battle with brain, spinal cord inflammation

By Hina, mother of CHOC Children’s patient Rayaan

When Rayaan was 16 months old, he caught a simple cold. He had a typical low-grade fever and slept more than normal. I figured he needed the rest and would feel better the next day. The next morning, he was having a difficult time waking up so I thought I should take him to his pediatrician. She recognized something was very wrong and described him as being “unresponsive.” He was immediately transported to CHOC Children’s via ambulance. CHOC’s emergency department team was waiting for our ambulance and ready to care for Rayaan as soon as we arrived. They quickly assessed him and then placed him on a ventilator as he was brought up to the pediatric intensive care unit (PICU).

His care team ordered an MRI of his brain and diagnosed him with Acute Disseminated Encephalomyelitis, also known as ADEM. This means there was widespread inflammation in his brain and spinal cord that damages the myelin, which is a protective covering for nerve fibers. ADEM had affected over two thirds of his brain. We didn’t know it yet, but we would be at CHOC for the long haul.

Over the course of the next six weeks, Rayaan received multiple types of treatment for ADEM. His care team was vast, and included many different specialties: Dr. Nguyen Pham, a pediatric otolaryngologist (ear, nose and throat specialist or ENT), Dr. Gregory Wong, a pediatric gastroenterologist, Dr. Sharief Taraman, a pediatric neurologist, in addition to infectious disease specialists, in-patient physical and occupational therapists, a respiratory therapist, and the feeding team. He was in a coma and on life support for three weeks. During this time, his doctors kept a very close eye not only on him, but also on our entire family. Dr. Nick Anas, CHOC’s physician-in-chief; Dr. Jason Knight, medical director of emergency transport services; Dr. Paul Lubinsky, associate PICU director; and critical care specialists Dr. Juliette Hunt, Dr. Anthony Cherin and all of our nurses became family to us. I remember when Dr. Anas came to check up on Rayaan and he asked me when was the last time I layed next to Rayaan, I replied it’s been a while, and he ordered the PICU staff to transfer Rayaan from a crib to a full-size bed immediately, so I could lay next to my son. Rayaan was connected to every machine and monitor you can imagine, but his doctor was keeping my feelings in mind.

During this extremely difficult time when we were waiting for him to wake up, we were fortunate to have a wonderful support system. The Ronald McDonald Family Room let us escape for a few minutes, occaisionaly breakfast and lunch was provided by generous donors, and my daughter who was only three years old at the time was taken care of by child life specialists, while a social worker and case manager were assigned to us to provide us with counseling. This period was the hardest thing we had ever dealt with in our lives.

After three weeks of being in a coma, Rayaan began showing signs of waking up. He began by slightly moving his hands and arms. A few days later, we noticed his eye partially open. It would take him almost two weeks to be fully awake.  Although he had woken up from his coma, his journey was just beginning. The inflammation in his brain caused severe brain trauma and he lost his speech, and his ability to walk, eat, swallow and drink. While he was still in the hospital, a feeding tube was placed, as his oral muscles were to weak to swallow and chew. After his discharge, the rehabilitation team came in to ensure he would relearn the basics. Nicole Well, a speech language pathologist at CHOC, taught my son how to talk again. A feeding therapist named Polly provided electrical stimulation feeding therapy to make his muscles strong enough again to be able to eat, drink and swallow on his own.

rayaan-emergency-transport-to-pediatric-intensive-care-unit
Four years after his health scare, Rayaan is in Transitional Kindergarten and still undergoes multiple therapies in the effort to make a full recovery from his illness.

Rayaan endured several surgeries and procedures during his hospitalization, and even more after his discharge and as well as multiple visits to the emergency department at CHOC. The CHOC specialists always worked so hard on Rayaan as if he were their own child. I am very grateful to CHOC for saving his life and I know that the comprehensive care we received at CHOC we wouldn’t have been able to get anywhere else.

Today, four years later, Rayaan is in Transitional Kindergarten and still undergoes multiple therapies in the effort to make a full recovery from his illness. He remains under the care of CHOC specialists. I am inspired every day by his strength and his courage to overcome so much at such a young age. Above all, our family is grateful for CHOC, who has provided him with the comprehensive medical care throughout his journey.

Learn more about the pediatric intensive care unit at CHOC

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CHOC Walk in the Park 2017: Why I Walk – Team Miranda

Seven years ago, Miranda woke up screaming in the middle of the night from unbearable head pain. She couldn’t move or recognize her parents, and then she collapsed.

Miranda’s parents rushed her, a 10-year-old at the time, to a local hospital. Physicians there initially told them to wait three days for observation.

Dr. Jason Knight, a CHOC Children’s pediatric critical care specialist and medical director of CHOC’s emergency transport services, was on call at that hospital that day, and met with Miranda’s parents, Regina and John.

An Emergency Transport to CHOC

“Dr. Knight explained what was happening better than anyone else at the hospital,” Regina remembers. “He suggested we transport her to CHOC so she could be seen by pediatric specialists. We were scared to move her, so we asked Dr. Knight if he would transport Miranda if she were his own daughter. He said yes, and we trusted him.”

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Dr. Jason Knight, critical care specialist, chair of the department of medicine, and medical director of emergency transport services at CHOC Children’s

Dr. Knight recalls, “As the physician covering the local hospital that day, it was my responsibility to assure that Miranda received the appropriate care in a timely manner. As soon as I assessed her condition and reviewed the CT scan of her brain, it was clear to me that Miranda needed to be transferred to CHOC immediately. I contacted Dr. Michael Muhonen, a pediatric neurosurgeon at CHOC, and coordinated Miranda’s transfer to CHOC.”

Scans revealed she had an arteriovenous malformation (AVM), a tangle of weakened blood vessels that had ruptured and started to bleed in her brain. Upon arrival at CHOC, Miranda immediately underwent neurosurgery with Dr. Muhonen, medical director of the neuroscience institute at CHOC.

“Miranda was critically ill upon arrival to CHOC. She reminded me of my own three daughters― innocent, beautiful and vulnerable. It was with this in mind that I approached her operation― do what it takes to keep her brain alive and functional,” recalled Dr. Muhonen.

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Dr. Michael Muhonen, medical director of the neuroscience institute and director of neurosurgery at CHOC Children’s

After a successful four-hour surgery, Miranda was placed in a medically-induced coma for several days. Her parents didn’t know if she would survive.

“When Miranda was in a coma, I told Dr. Knight that I wanted to take a photo of her so that I could show her when she woke up, but that I didn’t want to take it if she wasn’t going to make it,” recalls Regina. “For a few days, he wouldn’t let me take the photo because he wasn’t sure if Miranda was going to survive. Then one day, Dr. Knight told me it was ok to take a photo of her, and I knew that meant she was going to make it.”

John adds, “My family is intact today because of wonderful doctors like Dr. Knight, Dr. Muhonen and their teams. It’s just amazing what CHOC does. We are so blessed.”

The Long Road to Recovery

Miranda’s recovery process included child life specialists, physical therapy and rehabilitation. She spent one month at an inpatient rehabilitation facility followed by an additional three months of outpatient care learning how to walk and talk again.

The first year after surgery was critical. Miranda saw Dr. Muhonen every few months for checkups to monitor her brain, as well as a CHOC ophthalmologist to make sure her sight was progressing.

“The AVM and the clot were removed successfully, and Miranda has recovered with minimal long-term deficit,” says Dr. Muhonen. “My reward is not only seeing a disease-free brain on the post-operative MRI, it is the omnipresent smile and effervescent personality that Miranda still has, despite her near-death experience.”

Everything came back except her sight. She lost 25 percent of her vision in both eyes, but that hasn’t stopped her from dancing, her favorite activity since age 8. Miranda’s parents had to supervise her at all times for the first year after surgery to make sure she didn’t have a seizure (a possible side effect of brain surgery), which meant that her mom went to every dance practice and every pool party to ensure her daughter’s continued safe healing.

Giving Back to CHOC

A few months after Miranda’s surgery, her family was invited to participate in CHOC Walk in the Park by friends.

choc walk
Miranda and her family at their first CHOC Walk in the Park, just a few months after her emergency neurosurgery

“After what we went through, we felt closely tied to CHOC. We walked that year and fell in love with the event. We realized this was an affordable way to give back to CHOC,” recalls John. “My favorite memory was our very first CHOC Walk. Miranda walked alongside us, which was a huge accomplishment. A couple months before that, we weren’t sure if she was ever going to walk again. To see her walk on her own was the most memorable moment for me.”

The family’s first CHOC Walk was especially impactful for Miranda herself.

“I will never forget attending my first CHOC Walk one year after my surgery. I remember seeing other patients participating in the walk with their own team just like me, only they needed walkers or wheelchairs to have the capability of walking the entire distance. Seeing other patients that were struggling to do the simple task of walking, something that people take for granted, made me reflect back to being a patient at CHOC, where I once struggled with relearning how to walk during physical therapy,” recalls Miranda. “From that moment on, I promised myself I would always participate in the CHOC Walk and give back as much as I could, not only to represent the patients who couldn’t recover as fast as I did, but also for the patients that don’t make it. I am reminded every day by the scar on the back of my head of how blessed I am to have been a patient at CHOC.”

choc walk
Every year since her emergency surgery, Miranda’s family rallies dozens of friends to participate in CHOC Walk in the Park.

Every year since then, Miranda’s parents gather dozens of friends, family and co-workers to join Team Miranda, the CHOC Walk team they formed in honor of their daughter. They formed their team with the help of the Littlest Angel Guild, a philanthropic group that raises funds to support the mission of CHOC.

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Miranda and her family at the 2012 CHOC Walk in the Park

“We encourage people we meet to participate in CHOC Walk to help provide the best medical care for the children in our community. You never know if or when CHOC’s services will be needed for your children, for your friend’s children, for your neighbor’s children, or even a stranger,” says John, whose employer, Hill Brothers Chemical Company also sponsors CHOC Walk, in addition to the other philanthropic events benefiting CHOC. “We learned firsthand how much everyone at CHOC cares – the doctors, the nurses, the administrators, and staff throughout CHOC all genuinely care about the children and their families.”

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Team Miranda at the 2013 CHOC Walk in the Park

Experience at CHOC Inspires Future Career

Now a senior in high school, Miranda is preparing for graduation and heading off to college. Inspired by her experiences at CHOC, she is planning to major in psychiatry and dreams of becoming a pediatric optometrist.

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