Nikki Schueller learned a lot about sepsis after her son's six battles with it. Here's what she wants all health care providers to know.
Nikki Schueller’s son, Parker (front), has battled sepsis six times.
By Christine Bush
Nikki Schueller's son, Parker, had a rough start in life. At 4 weeks old he started vomiting. It increased with such severity he was hospitalized at 8 weeks old. Since he couldn't keep in the little nutrients he ingested, doctors used a nasogastric tube and then a gastrostomy tube to deliver nutrients into his stomach. The vomiting continued, and a few months later a doctor diagnosed Parker with cyclic vomiting syndrome, which is characterized by episodes of severe vomiting with no apparent cause.
Constant vomiting caused extreme dehydration, prompting frequent visits to emergency departments (ED) for IV fluids. The delivery of those fluids was vital to keeping Parker's body functioning. At age two, Parker got his first medical port so his parents could administer IV fluids at home. "It really made it easier," Schueller says. "Before the port, he was getting poked and prodded, and his veins were starting to shut down. The port allowed us to take care of him at home and not have to go to the emergency department."
Over the next two years, the episodes decreased, but he still needed the medical port to deliver the lifesaving fluids. Schueller says she knew because of his medical port she had to watch for fever, but she doesn't recall knowing why fever required an immediate ED visit. She quickly learned. Parker spiked an unexplained fever, and he was hospitalized to determine if he had an infection.
"That admission ultimately saved his life multiple times" Schueller says. "I was able to walk through what a sepsis admission looked like without actually having to go through sepsis." She witnessed the protocol for suspected sepsis: 72-hour hospital stay, daily blood draws, waiting to see if anything grew in the petri dish. The calm, relaxed atmosphere helped her understand what they were up against with sepsis.
Tests determined Parker didn't have sepsis on that visit. But the next time Parker spiked a fever it was not a drill. "Even though he had sepsis this time, it still seemed very straightforward," Schueller says. "We went to the hospital. Somebody tested his blood. They told us he had an infection. He got antibiotics, and he got better." Parker became septic a second time around age 5.
The Schuellers knew they had to be on high alert after IV treatments and other procedures. But watching for changes in a child with medical complexity is difficult. Parker also has the very rare Bainbridge-Ropers syndrome, a result of a mutation of the ASXL3 gene. He is non-verbal with developmental delays and mobility issues.
In Parker's case, there were many days his mom observed that he seemed tired or seemed off. "I was always trying to figure out if it was one of those days or are we heading into a very serious situation," she says.
Facing an emergency
When Parker was 7, his head dropped to the table and the family new something was seriously wrong. They immediately rushed to the car to take him to a hospital an hour away. But the Schuellers had been taking Parker to C.S. Mott Children's Hospital in Ann Arbor, Michigan, for the last three years, and they knew that's where Parker would receive immediate, life-saving treatment.
Schueller called 911 asking for a local ambulance to intercept and rush her son to C.S. Mott Children's. But the operator wanted the family to go to the local hospital. Schueller told the operator, "If I take him to the local hospital he will die."
When the family reached C.S. Mott Children's, the first person they encountered was the nurse who treated Parker during his last sepsis admission. "I said, ‘He's septic,' and she didn't even respond. She got up, got the doctor. It was boom, boom, boom," Schueller says. "Because of her, we were able to save his life that day."
Parker is now 11, and Schueller uses her experience with sepsis and caring for a child with medical complexity to help others. She is on the parent advisory council at C.S. Mott Children's, and she shared her story with the Improving Pediatric Sepsis Outcomes Collaborative.
Schueller says she is grateful the danger of sepsis has moved to the forefront of conversations. She says providers have a better understanding of how rapidly sepsis can harm or kill a child, and providers are doing a better job of honoring when the family says something is not right with their child.
Parents know their child best
"No one knows your child better than you," she says. "It's a horrible feeling as a parent when you look back and the voice inside was saying, ‘Something is wrong with this child,' but you didn't say something because you didn't want to rock the boat or you didn't feel qualified."
From a parent's perspective, Schueller says there are three things all hospitals can do help kids survive sepsis:
- Use the word "sepsis." Talk about it, acknowledge its power and don't call the serious situation by another name.
- Arm parents with as much information as possible, even if it is scary. Let them know their child is more susceptible to sepsis and why they need to act quickly at the first warning sign.
- Honor the people who are at the bedside who can share what they see, what they know and what they are worried about.
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