North Greene girl’s journey with kidney disease
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By Carmen Ensinger
In 2017, Journee Vinyard was a happy go-lucky active six-year-old with not a care in the world. But her world would change in the blink of an eye after a routine well-child visit to the family physician and she would begin on a journey (pun intended) that continues today.
This visit began a long road in search of answers, going to multiple doctors and hospitals and, ultimately, arriving at St. Louis Children’s Hospital.
On June 30, 2017, Journee’s mother, Kendra Wallis, took her daughter to the pediatrician as she did every year. Her grandmother and Kendra’s mother, Julie Wallis, an LPN and school nurse, worked in the pediatrician’s office at the time.
“Her appointment started off by me taking her blood pressure – it was 180/110. I almost fell over and had my co-worker take it again and the doctor,” Julie Wallis. “The doctor said this was not normal and told us that children with high blood pressure often have kidney problems, so she called the ER at St. John’s Hospital in Springfield and sent us there right away.”
Up to that point, Journee was just like any other six-year-old.
“She was an active kid playing ball, dancing and there were no signs of any problems,” Wallis said. “It was an incidental finding and it was just caught that day.”
Journee was admitted to the ICU at St. John’s, where they tried to control her blood pressure with IV medication and her kidneys were not functioning well. She had an ultrasound that showed her right kidney was very small, and both her left and right kidney had abnormal blood flow as shown by Doppler. She was eventually diagnosed with renal artery stenosis – a narrowing of the blood vessels that supply the kidneys, leading to her high blood pressure.
“She was getting sicker each day, and the hospital started talking about dialysis, which they did not typically offer for children,” Wallis said. “So they began consulting with St. Louis Children’s Hospital and soon Journee and Kendra were in an ambulance on their way to St. Louis while I followed behind them,”
Journee was admitted to the ICU at St. Louis Children’s Hospital and was cared for by Washington University pediatric intensivists, nephrologists and other specialists.
Once Journee’s blood pressure was stabilized, requiring five anti-hypertensive medications, she was able to go home but returned to the hospital soon after for a CT scan. In addition to severe renal artery stenosis, affecting both her kidneys, she was also diagnosed with midaortic syndrome – a condition where part of the aorta (the largest blood vessel coming from the heart) and its major branches in the abdomen narrow, which can lead to impaired blood flow to the kidneys and other organs.
Journee eventually had her right kidney removed because it was severely damaged by the renal artery stenosis and was providing only about six percent of her total kidney function but was contributing significantly to her high blood pressure.
Journee’s hospitalization continued in the ICU. Unfortunately, a clot formed in her left renal artery and she developed acute kidney injury.
She was unable to make any urine to maintain fluid and electrolyte balance or remove metabolic waste products from the body, and required dialysis.
“At the time they said they didn’t think the left kidney was going to recover and that she might need a transplant,” Wallis said. “We were beside ourselves. She was on a vent for over a month, and she needed transfusions and dialysis.”
Journee was able to finally go home again, and her mother and grandmother learned to do dialysis from home, but she later had a seizure and was back in the hospital through the holidays.
“They kept trying dialysis and we just kept praying, ‘Please, God, let the left kidney work, let it get blood.’ We didn’t want her to lose another kidney,” Wallis said. “We just needed an answer to our prayers.”
Kendra and Julie maintained a constant vigil, staying with Journee at the hospital, while Julie’s husband and Kendra’s dad, Rich, and their son, Carson, were home. Journee’s father, Chris Vinyard, his wife, Sierra, and their children and Journee’s siblings, were also a great support system, as well as her grandparents, Gene and Eva Vinyard, who all visited and stayed at the hospital whenever possible.
With each passing day, the family just hoped for any sign that Journee was getting better. Eventually, Journee started making a small amount of urine, which signaled to the doctors that her left kidney could possibly function.
One day in early February 2018, Kendra went home for some rest when David Balzer, MD, a Washington University interventional cardiologist and ARCH team specialist, walked into Journee’s room and brought the family some hope.
“We decided to recanalize to her left renal artery (restore blood flow) and took her to the cath lab, where we opened the left artery where it was occluded (obstructed) through a catheter and put a stent in,” Dr. Balzer explained. “That improved the situation significantly, and her hypertension became more manageable through medication, and she no longer required dialysis.”
By mid-February, she was able to go back home. The family kept their White Hall friends and family updated on her progress through a regular Facebook page called “Journee On,” and the town welcomed her home with a parade and police escort.
Now at 10 years old and getting ready for the fifth grade, Journee’s left kidney continues to function well, and she is a regular patient of the ARCH clinic.
“She will remain under continued observation and preventative maintenance to make sure that everything is functioning well with the stent,” Dr. Balzer said. “Every few years, she may need to return to the cath lab to look at the renal artery stent.”
“Children with midaortic syndrome, as a result of severe hypertension, are at high risk for long-term complications including early coronary artery disease, heart failure, chronic kidney disease, and stroke,” Dr. Stotter said. “My role in Journee’s care is to provide medical management of her hypertension and monitor for end-organ damage related to uncontrolled hypertension.”
About a month ago, Journee went in for another medical procedure – a cardiac cath to go up and measure the pressure around her heart and to check the stent that is in her renal artery going to her kidney to make sure that it was not blocked.
“The reason they wanted to do this procedure was because she was starting to have higher blood pressures again even though she is taking four blood pressure pills,” Wallis said. “The procedure came out fine and there were no blockages in the stent. We are continuing to monitor her blood pressure and her labs and echocardiogram to keep an eye on her heart.”
This fall, Journee could be found on the side of the football field cheering on the North Greene Knights football team.
“To look at Journee, you would never know that anything was wrong,” Wallis said. “She continues to have no visible symptoms and really enjoys cheerleading.”