Bentley J’s Story

My seven year old grandson Bentley contracted Shiga toxin-producing E.coli (STEC) at the sandbar at Lake Anna on May 25, 2024 (Memorial Day Weekend). His dad took him to the sandbar.  It is really shallow and a perfect place to hang out all day and play. Approximately 26 other people also got sick while having a day of fun at the sandbar.

On Thursday, May 30th, Bentley started complaining of severe abdominal pain, so his mother took him to the ER at Augusta Health Medical Center in Fishersville, Virginia.  The doctor suspected appendicitis, so Bentley had a CT scan. It was clear, so appendicitis was ruled out.  My daughter told them that they were planning on leaving for Disney World the next day.  They suspected he had a virus and cleared him to go.

At 11:00 a.m. on Friday, May 31st, we left (6 adults and 6 children & 2 vehicles) for Disney World. After about 6 hours into the trip (halfway there), Bentley started having diarrhea approximately every 30 minutes.  By the time that we got to Florida, his stool was all blood. 

After arriving at our hotel in Orlando (around 3AM), my daughter and I took Bentley to the Advent Health Celebration Hospital.  He was immediately seen by a doctor and a sample of his stool was collected.  The doctor said that he did not want to give him an antibiotic because if it was STEC it would make it worse.  He also said that he did not want to give Bentley IV fluids, as he wanted Bentley to drink PO to keep his stomach working. Bentley was having a BM every 10 – 20 minutes and it was pure blood. The doctor released him and said that he would call us as soon as he knew the results.

The next day, Bentley was very lethargic, and was still having constant bowl movements.  He rested most of the day in the hotel and you could look at him to see how miserable he was. That night, Bentley looked very pale, so we took him back to the hospital. We saw the same doctor and this time he ordered IV fluids as Bentley was dehydrated from losing so much fluid.  Bentley was drinking plenty of water, but he just couldn’t keep up with the demand. 

It was confirmed that Bentley had a STEC infection. All three of us spent the night at the hospital and Bentley was released in the morning.  We returned to the hotel and packed up all of our items and headed to Disney World, where we would be staying the remainder of the trip.

Once we arrived at our hotel at Disney World and unpacked, Bentley just rested throughout the day. Bentley said that he was feeling better. His loose stools were not as frequent as they had been, so we thought he was getting better. 

On Monday morning, Bentley said that he wanted to go to Disney, so we put him in a stroller and took him to the Magical Kingdom. Somehow this really didn’t seem magical at all… After a few hours of being at Disney in over 90-degree weather, Bentley said that he wanted to go back to the hotel. I took him back so this would not impact the other 10 people who were trying to enjoy the vacation.  After getting back to the hotel, Bentley rested for the remainder of the day. 

On Tuesday morning, Bentley said that he thought that he was feeling better and wanted to try Disney again.  We took him to Hollywood Studios in the stroller and he rode in it most of the day.  He was able to ride a few rides, so we thought we he was on the road to recovery.  On Wednesday and Thursday, he rode more rides and said he felt OK. 

On Friday, we visited Buckees and then we headed back to Virginia. On the drive back home, Bentley vomited all over the car.  We thought it was from him drinking a Slurpee too quickly.  We got home early Saturday morning and noticed Bentley was very lethargic and pale. Thankfully, he had an appointment scheduled to see his pediatrician on Monday.

On Monday June 10th, the pediatrician took one look at Bentley and ordered blood work STAT.  He was very concerned with his medical status. Once back home, we received a call from the doctor’s office stating that Bentley needed to be admitted to the University of Virginia Medical Center. He had developed Hemolytic Uremic Syndrome (HUS).

We were very scared as we did not know what to expect or really understand exactly what was going on. He was put on the children’s nephrology unit and his platelets continued to get lower. The doctor at UVA took her time and explained everything and she welcomed questions.  The doctor even invited me to sit in on the rounds of the 12 doctors that would be discussing Bentley’s case.

On the 3rd day of his hospital admission, he got a nosebleed in the middle of the night, and it took a while to stop his nosebleed.  That was an indication that his platelets were low.  His platelets count was checked again, and it was determined that he needed a blood transfusion as it was 6.7.  He received the transfusion, and he immediately felt much better.  The doctor said that is typical, but his platelet count may go down again and he may need another transfusion.

His blood pressure did go up (142/106) but he was given blood pressure medicine, and it went back down. The next day, his platelet count remained stable and his hemoglobin was 9 and his platelets were 200. Bentley was very fortunate that he did not need kidney dialysis.

They took him off of the IV fluids to see how his body would respond, and he did fine. They next day, his numbers continued to be good, and he was overjoyed to be released from the hospital. He has had a few appointments with his pediatrician for follow-up, but he has remained stable.

Bentley is back to being a normal 8-year-old boy.  He played football in the fall and races his dirt bike on most weekends.  He is also on the wrestling team. 

Hopefully, we will be able to return to Disney World again, as Bentley was too sick to enjoy it and everybody else was too worried about Bentley.