A Fighting Spirit: Kelsey’s Story

Thanks to expert care, Kelsey survived toxic shock syndrome.

By Erica Gadbois

On a Sunday in late 2018, Kelsey Johnson, then 17, woke up with flu-like symptoms and a fever. She called in sick to work and settled in for a day of recovery at home. On Tuesday, she developed an unusual rash. By Thursday, she was intubated and heavily sedated at Rady Children’s Hospital-San Diego with a 5 percent chance of survival. Toxic shock syndrome caused by the bacteria Staphylococcus aureus was plaguing her body.

Kelsey’s mother, Kari Johnson, says Kelsey’s harrowing experience began looking like any typical cold or flu. But when her daughter woke up a few days after her symptoms began feeling lethargic and sicker than she had, she immediately took her to urgent care near their Temecula home, from which she was promptly sent to the nearby emergency room. Her timing couldn’t have been more spot-on. “She was able to walk into urgent care, but she wasn’t able to walk out on her own,” Kari recounts. “When we got to the emergency room, she wasn’t able to walk at all. This was all within the span of two hours.”

At the emergency room, Kelsey was evaluated and had astonishingly low blood pressure — just 60/23. Unsure of what exactly was causing her slew of concerning symptoms, physicians knew Kelsey needed to be admitted. However, because they didn’t take inpatient pediatric patients, she would have to be transported to Rady Children’s. The Temecula hospital coordinated with the Children’s Hospital Emergency Transport (CHET) team to have Kelsey picked up and rushed to San Diego by ambulance. The uncertainty of her condition and prospect of a hospital stay had Kelsey feeling frantic, but she and Kari both say the CHET team expertly worked to reduce her anxiety. “The helped take her from having a panic attack to feeling calm,” explains Kari. While they note all members of their transport unit were exceptional, Jeffrey Brian Fisch, A.L.S., R.T., C-N.P.T., stands out the most for his especially calming presence. “He was amazing for us in that moment,” Kari notes.

The ambulance arrived around 10 p.m. on Wednesday, and Kelsey was admitted to the pediatric intensive care unit (PICU) with two 24-hour care nurses. From this point and for several weeks forward, Kelsey doesn’t remember much, but Kari will never forget. “They told us [Kelsey’s father, Greg, and her two sisters, Kasey and Lindsey] how critical she was, and she kept losing consciousness and couldn’t breathe. I remember being sick to my stomach and them telling us that it didn’t look good.” On Thursday, Kelsey’s care team made the decision that she needed to be intubated — given a tracheal tube to support breathing — and placed under constant sedation to allow Kelsey to tolerate the breathing machine and give her body a chance to rest and recover. Susan Duthie, M.D., a critical care physician in the PICU, was watching over Kelsey’s care.

“Kelsey’s body was under a tremendous amount of stress,” says Dr. Duthie, “so much so that her heart and lungs were functioning at extremely low levels. Our number-one focus was bringing her back to a level at which she could regain strength and put up the best possible fight against what was attacking her.” Dr. Duthie lent additional support through a furry, four-legged friend — her golden retriever, Tank, with whom she volunteers in the Hospital’s Canine Therapy Program, PetSmart Paws for Hope at Rady Children’s Hospital-San Diego. The Johnsons are dog lovers and had a golden retriever of their own, and Kari says Tank provided much-needed comfort to her family.

Simultaneously, John Bradley, M.D., director of the Division of Infectious Diseases at Rady Children’s and a professor and chief for the Division of Infectious Diseases within the Department of Pediatrics at University of California San Diego School of Medicine, was working against the clock to determine what was making Kelsey so ill. Test results soon proved his suspicion of toxic shock syndrome accurate, and Kelsey’s care team leapt into action with critical therapies, including intravenous antibiotics. Kari explains that from that juncture, Kelsey had as many as 14 different IVs at once. “We’re so lucky to have ended up at Rady Children’s and with Dr. Bradley,” Kari expresses. “He knew exactly what needed to happen.”

“There are many different causes of shock in teenagers, but toxic shock is a unique bacterial infection that requires the use of antibiotics to stop the production of the deadly toxic shock toxin, treatment to neutralize the toxin, as well as antibiotics to kill the bacteria and prevent the infection from coming back,” explains Dr. Bradley. “Our team was using all these measures from the beginning, but once we had the culture results to confirm toxic shock syndrome a few days after she was in our intensive care unit, we knew that we were in for long recovery, that we needed to expect damage to many tissues and that she easily could have died before she arrived at Rady Children’s.”

Dr. Bradley states that toxic shock syndrome has become much less common than it was in years past, making Kelsey’s case a bit of an anomaly. In fact, he says Rady Children’s hadn’t seen an incidence in more than a decade. Accordingly, he wanted to catalog the case with the Centers for Disease Control and Prevention (CDC) should any potential resurgence occur. Collaborating with Rady Children’s colleagues including Erica Sanford, M.D., a fellow in the PICU, and Michelle Vanderpool, supervisor of Laboratory Services/Pathology, as well as partners at the County of San Diego’s Public Health Services, Dr. Bradley sent a sample to the CDC for analysis. The organization confirmed and filed the toxic shock diagnosis. “I don’t think all of us fully grasped the magnitude of that until recently,” marvels Kari.

Even with a diagnosis, Kelsey’s fight was far from over. She received a blood transfusion to ensure her tissues maintained sufficient oxygen levels. Her heart rate would hit alarming highs and lows, once going up to 270 beats per minute (for perspective, a normal rate for someone Kelsey’s age is between about 60 and 100 beats per minute). And, “it was probably day four or five when her toes started turning black,” says Kari.

“When the heart cannot pump blood with oxygen to tissues, they die,” explains Dr. Bradley. “The toes and fingers are usually the first to go. If the body is trying to generate fever, it [also] takes blood flow away from your extremities that lose heat, which can make blood flow to the fingers and toes even worse.”

“To me, there were two nurses in particular that stand out in that moment, Richard and Sarah. I remember Richard at one point leaving her room and saying, ‘I’ll be right back.’” Richard had gone to the neonatal intensive care unit to get a few of the heaters used to keep tiny babies warm, and he and Sarah wrapped Kelsey’s feet with towels and the heaters to reduce inflammation and damage. “This was a huge moment in the care we were getting. They took the extra steps to take care of her. I was amazed they even thought to do that and took the time,” Kari continues. As a result, Kelsey’s toes were saved from a potential amputation.

During her weeks-long stay, Kelsey notes that either Kari or Greg, or both, were always by her side. Her sisters were also there as much as they could be, and they had a unique and touching way to connect with Kelsey even when she couldn’t respond. Kari says the girls would sit with Kelsey and play music, especially her favorite bands, Maroon 5 and Coldplay. To her amazement, Kelsey’s vital stats would visibly improve in conjunction with her most beloved tunes.

When Kelsey started to turn the corner after what Kari calls “a teeter-totter ride,” her strong bond with her family supported her recovery in another remarkable way. Awake but continuing with intubation, Kelsey couldn’t speak and express herself. But her sister Kasey had a solution. Both girls are proficient in American Sign Language, and Kasey used it to converse with Kelsey and pass along her thoughts to the Johnsons. “Dr. Bradley told us that was the first time someone intubated was able to communicate like that,” remarks Kari. He even ensured Kasey was recognized as Kelsey’s legal interpreter so she could still visit during the Hospital’s flu restriction season.

Soon after, Kelsey moved from the PICU into general inpatient care. Working back to her usual driven self, she quickly took charge of her recovery, earning her a release four weeks ahead of what was anticipated. “That’s because of her determination and fighting heart,” Kari says, giving her daughter’s devotion to physical therapy as an example. “Even after PT, she would lie in bed and do her own.”

Kari comments that Kelsey’s care team was also always in her corner, working right along with her to get her healthy and home. “They were all just amazing,” she emphasizes. “We cannot say ‘thank you’ and appreciate the staff enough. I truly feel they saved her life.” She even provides a few more specific shout-outs to Raveen Raviedran, M.D., one of the critical care physicians in charge of Kelsey’s sedation and medications — “When I explained to him that she’s a go-getter, he was on my side, pushing her, working to get her awake sooner” — and PICU nurse Mary Jo Pleisch, who brought Kelsey her favorite candy, Junior Mints, when she made an offhand mention of them — “It was little things like that that kept her spirits up and motivated her.”

On New Year’s Eve, able to take just a few steps on her own, Kelsey went home. True to form, she is going to the gym almost every day and continuing her physical therapy, and has regained her ability to walk. At 60 percent function, her heart is still healing, as are her eyes — between the toxic shock syndrome itself and her myriad medications and devices, she experienced some temporary effects on her vision. But she’s strong, she’s bright and she’s laser-focused on her future. As she continues to recover, Kelsey will finish her senior year through home school, but she’s maintaining her top-notch grades and aims to walk in her graduation ceremony with the rest of her class this June. From there, she hopes to attend San Diego State University and major in sociology. “This experience opened my eyes to more jobs that are available [in that field],” she explains. “Maybe I’ll do something within the hospital.” Don’t call it an official job offer, but we’re pretty sure Rady Children’s would be glad to have her back — just as a member of the team this time around.

Published March 2019