Joey’s Story

On June 24, 2021, I took my two boys to the Sunflower Festival. We spent a happy day playing all the farm games, going through the maze, and visiting the petting zoo. Six days later, my 2-year-old Joey, lovingly named “Brother” by his older brother, began to have loose stools. His activity level and appetite were fine, so I didn’t think much about it. 

By the evening Friday July 2nd, it had progressed to diarrhea. He was still eating and drinking and was still a very active 2-year-old. The next day, Saturday, we took a planned trip to Rock City and the park. We even went out to eat. By the evening, he had started to slow down, and the diarrhea was getting worse. 

Early Sunday morning, July 4th, he started pointing to his diaper and saying “ow” every time he peed. At 8:00 a.m. we arrived at a children’s urgent care in Hixson, Tennessee. The doctor there shared my concerns, but found nothing alarming in his urine and no blood in his stool. She said he may have some kind of bacterial infection, but due to having diarrhea it would be dangerous to give him antibiotics. (I would later call her and personally thank her for not prescribing antibiotics.)  She said that if he started having blood in the stool to take him to the ER at Children’s Hospital in Chattanooga for testing. 

Four hours after we arrived home, I found the first blood in his diaper. We immediately headed to the hospital. They did cultures on the diaper and said it would take a few days to get results.  Since Brother was drinking fluids and showed no signs of dehydration, we were discharged home. I called the hospital Monday afternoon, but the culture wasn’t back yet. 

By the early hours of Tuesday July 6th, he had started vomiting and was unable to hold down drinks. By 7:00 a.m. I was spooning tablespoons of water in his mouth every 5 minutes while waiting impatiently for the pediatrician’s office to open. I decided to call the hospital again to check on the status of the culture. I was connected with the ER doctor who explained that Brother had tested positive for E.coli:0157:H7.  Thankfully he was not given antibiotics because with this pathogen, it makes the bacterial infection worse.  

The clinician in the Pediatric Intensive Care Unit (PICU) wanted to speak with me. As she was explaining what signs to watch out for, Brother climbed off his father’s lap and walked over to me. I remarked aloud that his sclera was yellow. The doctor stopped and said, “I want you to return to the ER now!” Brother and I got into the car and headed to Chattanooga, completely unaware it would be three weeks before we returned back home.  

When we got to the ER, we were processed through the emergency department. A resident (one of the best doctors I’ve ever met) came in and explained that due to the E.coli in the stool and the jaundice we could now see, it was suspected that Brother had developed Hemolytic Uremic Syndrome.  HUS is a red blood disorder that can cause acute kidney failure.  I was stunned! 

I have worked in the medical field for years, am fairly well read and educated, and had been a mother for over 20 years.  However, I had never heard of HUS.  At that point we did not know where he had contracted the bacteria. The doctors, as well as the Georgia Department of Health, kept asking about what he had eaten. We all go the same places, eat basically the same things, and my older son was the burger lover. We really had no idea what caused Brother’s illness. 

While we were waiting for a bed to become available in the PICU, Brother was admitted to the pediatric floor. He was no longer putting out urine, and his labs, taken every few hours, showed that his kidney function and blood condition were worsening at a very rapid rate. 

Wednesday morning July 7, he was transferred to the PICU and several things happened in a matter of hours. He was taken to the OR and put under heavy sedation. A vascath was placed in his heart and a PICC line was out into his right thigh. He was also intubated and placed in a medically induced coma. That afternoon, continuous renal replacement therapy (CRRT-a type of non-stop dialysis) began.  At that point, there was not a pediatric nephrologist in Chattanooga, so the clinicians in our PICU were consulting with a nephrologist in Memphis. There were discussions about us transferring to Memphis or CHOA because the CRRT machine kept clogging. We believe it was due to the 7 transfusions and 2 bags of platelets he was given, but later we learned that blood clotting is a common challenge with HUS.  They managed to keep the CRRT running for 14 days and Brother thankfully began to turn the corner. 

A few days after his dialysis treatment began, I was sitting in a chair in the room where we lived for 21 days, scrolling through pictures on my phone. I came across the pictures I had taken at the petting zoo and felt like I had been hit by lightning!  I very suddenly and vividly recalled Brother’s interaction with the goats at the petting zoo and I knew without a doubt that was where he had gotten the STEC pathogen.

Brother had been on narcotics for a few weeks and they had been weaning him down. Once he was ready for the ventilator to be removed, the extubation process was very difficult.  They couldn’t get his heart rate and respiratory rate under control, and we were all terrified that he would have to be re-intubated.  For a few moments it was quite scary, but the brilliant doctors were able to administer medication that helped him level out again. A few days later we were able to go back to the pediatric floor.  

On July 27, 2021, we were finally able to go back home. Walking in the door and reuniting my sons was magical. I have a video of the joyous reunion. I love to watch it, especially on days when they can’t stop arguing.

Brother was on blood pressure medication for another week after discharge, and it took almost a year for his kidney numbers to return to “normal”. Three years later, he is at Stage 2 Chronic Kidney Disease.  HUS did cause permanent damage to his kidneys. 

For the first few years after his release from the hospital, every single time he got sick, he would get the croup, with its barking cough and high-pitched wheeze. The pulmonologist wasn’t overly concerned but wanted to do a scope to ensure that the issue was not acute stenosis of the trachea due to an intubation injury. Since the croup symptoms were mild and only occurred during illness, we declined, seeing no real reason to endure general anesthesia again.  With the passing of time, this issue seems to have now resolved on its own. 

We see Brother’s pediatrician and his nephrologist annually, but on a six-month rotation so that his blood pressure gets checked every 6 months. We are lucky to live just a few hours north of Atlanta, so he sees the pediatric nephrologist at CHOA, which is ranked top ten in the country. We go back in July for his annual visit. Brother will have his kidneys checked every year for the rest of his life.