"He loves 'The Wheels on the Bus,' and he loves to be held and talked to, because he wasn't for so long," said Stephanie McFarland, mom to Ezekiel "Zeke" Higgins.
Stephanie and her husband adopted 3-year-old Zeke from Bulgaria and brought him home to nine excited siblings at the beginning of 2021. With seven biological children, and three adopted, they make the health and happiness of their kids a top priority.
Zeke was born with Down syndrome and Hirschsprung’s disease, a condition that affects the large intestine (colon) and can cause problems with passing stool. In Bulgaria, Zeke underwent a surgical procedure called a colostomy to address his Hirschsprung’s disease. Zeke’s new parents understood he would need specialized care when they adopted him, but they had minimal medical history and no indication of how well the surgery had gone.
When Zeke first arrived in the states, the family’s priority was to make sure Zeke met with Dr. Jeffrey Haynes for a comprehensive health exam and treatment plan.
After meeting with Dr. Haynes and learning more about the state of Zeke's wellbeing, Zeke’s parents decided on a reversal procedure for his colostomy to improve his quality of life. When the family arrived for the procedure in mid-August, no one expected Zeke to be in the hospital for almost a month.
Zeke's surgery seemed to go well, but he was still having pain. He was fussy and not sleeping well.
"I knew something seemed wrong,” said Stephanie. “Still, there was no fever and his vitals still looked good. It was at that point that I asked to see the doctor because something seemed wrong, and we needed to figure out what it was. I thought there was a chance I was overreacting but considering my daughter previously had sepsis after surgery, I knew there was a chance it could happen. That was on our radar as being the worst-case scenario – only it got even worse."
When Zeke's blood pressure dropped to 50/30, and his vital signs declined, our PICU team quickly identified the signs of septic shock. They consulted with the surgical team, who discovered that the connection between Zeke’s colon and his rectum had separated, causing fecal matter to leak into his abdomen.
Sepsis and septic shock can result from infection anywhere in the body, such as pneumonia, influenza or urinary tract infections. While sepsis is a dangerous infection for people of all ages, it’s more deadly for children since their symptoms are sometimes more difficult to diagnose.
To improve our ability to diagnose sepsis quickly and accurately, we work with other hospitals to develop strategies for treating sepsis and are members of the Improving Pediatric Sepsis Outcomes. IPSO is a collaborative for pediatric sepsis with hospitals around the country and has developed screening tools and processes for recognizing and treating sepsis based on national guidelines.
It was these tools, customized by our team, that ultimately allowed us to manage Zeke’s sepsis and stabilize his health. The tools send alerts to the care team about sepsis risks keeping everyone aware of the patient’s condition.
"When a kid screens positive for sepsis, our team quickly huddles to determine the best treatment option for the patient to lower their risk of getting any sicker,” explained Jill McGehee, interim nurse manager in the PICU. “Our screening tools work in the background of our electronic medical records to give us up-to-date notifications for early response.”
When the sepsis was identified, Zeke was taken immediately back to the operating room to save the complex pull through procedure and a temporary colostomy was put back in place while things healed. Once he was stabilized, recovery required a long-term approach to managing expectations and setting tangible goals along the process. Stephanie says the PICU team did an excellent job outlining the path toward recovery for her son.
"I felt that they were really good at managing expectations and setting the bar for the next thing that we needed to manage. I always knew where the goal post was,” said Stephanie. “They made sure I knew what was going on and had an opportunity to ask questions. When appropriate, they got my input on what I would prefer to see happen for him."
It was moments of collaboration with the CHoR team that stood out to Stephanie and the family. They were all part of Zeke’s healing.
During his stay in the PICU, Zeke enjoyed his visits from the music therapy staff. Music brings Zeke so much joy and would often help keep him calm during moments of pain. Now back at home, Zeke claps along to music with his siblings and thrives on the energy of his bustling home filled with children and love.
“Zeke loves to celebrate. He loves when he’s celebrated, and he gets equal joy doting on others,” Stephanie said. “We tell people his favorite word is ’yay!’”
Given all he has overcome, the phrase that comes to our mind is “Yay, Zeke!”
Our PICU team provides outstanding care to infants, kids and adolescents who have undergone major surgery or transplants, experienced trauma, or are fighting cancers or a severe illness such as sepsis. Our alert system helps doctors and nurses recognize when patients are at risk of sepsis and ensures they receive the necessary antibiotics and IV fluid immediately.
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