Austin's Story

Ben wrote this story, and my friend Naomi edited it. I hope you enjoy, thanks!

On June 23rd, 2010, Austin Jones, two and a half, went camping with his mom and grandparents. As soon as his dad flew in from their home in Thousand Oaks to join the festivities, it would be the start of a long vacation (including a weekend getaway for his parents, a family reunion, a fireworks show put on by his uncle, and many fun days in the summer sun). Unfortunately, while camping and having the time of his life at the lake, Austin and his sister got sick. When Emma started feeling ill, the family cut their vacation short and went home to take care of her. This was the beginning of a story that will continue writing itself throughout Austin's whole life.



The next five days and four nights were sleepless not only for Austin and Emma, but also for their worried parents, Cortney and Ben Jones. Both children were in such severe stomach pain that their bodies would not allow them to rest, and they needed their diapers changed every twenty minutes. On Friday morning, Austin turned blue and started throwing up. His parents rushed him to the ER, where he was evaluated and sent back home. The following day, Emma went to the ER and was put on an IV to help rehydrate her. She began to recover quickly. Hoping for a similar fate for Austin, Cortney and Ben took him to see a friend of the family, Dr. Milligan. Getting an appointment was difficult, but Cortney thought Austin might be in serious trouble, so she persisted and finally got him in for evaluation. Dr. Milligan listened intently to the details of Austin's case, and quickly determined that Austin didn't just have the common flu. The doctor told the Jones family to immediately leave for Sacred Heart Children's Hospital in Spokane, WA. They quickly packed their bags and left, not anticipating more than a few days' stay in the hospital.

For most of that night, Austin was in the ER undergoing a seemingly endless number of tests. As he was obviously a very healthy child in general, he didn't seem that sick at first glance, but at 3:00 AM, the ER doctor finally had some news for the exhausted parents.

"Austin is very sick," he explained. "We're not sure what he's sick with, but we've narrowed it down to three possibilities. They're all quite severe." By the next morning, Austin was admitted into Sacred Heart.

Later that day, Cortney and Ben met Dr. Joel Hernandez, little knowing that he would end up saving their son's life. Dr. Hernandez, a very somber nephrologist, sat down with the worried parents and asked detailed questions about Austin's health. He intently wrote down all their responses, and upon finishing the interview, he had a hypothesis. Austin was showing signs of having a disease called Hemolyic Uremic Syndrome (HUS). Dr. Hernandez explained that Austin may have contracted the deadly bacteria E. coli 0157:H7, which was releasing toxins into Austin's bloodstream. This resulted in a chain reaction: Austin's red blood cells were breaking down and tearing apart small blood vessels in his organs, particularly impacting his kidneys. The doctor told Cortney and Ben that Austin's kidneys were basically shutting down.

The following day, Austin was taken into the Pediatric Intensive Care Unit (PICU) and put on Continuous Venovenus Hemodiafiltration (CVVH) to clean his blood twenty four hours a day. Despite the pain medication and sedatives, Austin was in continual discomfort and was only getting sicker. The balance was very delicate. If they gave him a higher dosage of pain medication, his digestive system would slow down. As antibiotics wouldn't work on the E. coli, digestion was the only way to eliminate the deadly bacteria. This continued for days. Austin was on complete gut rest, and would beg his parents for the food or water which they couldn't give him. Every day, his requirements for medication became higher. He had to have more tubes placed and holes poked in him than his parents ever dreamed they'd see in their small son. Austin was struggling for his life, and Dr. Hernandez was by his side day and night helping him fight.

Several weeks passed with no improvement in Austin's condition, and then he took a sharp turn for the worse. His stomach was growing at an astounding rate. Two stomach X-rays later, a pediatric surgeon informed the terrified parents that Austin was going to receive emergency surgery. Cortney and Ben waited hours for word on the proceedings. Finally, the surgeon came out and told them that the bacteria in Austin's system had attacked his colon, and they'd had to remove eleven inches of decaying organ. Austin was left with a colostomy and no functional digestive system. After the surgery, it took several days for Austin to stabilize. These were some of the worst times of his entire sickness, but he fought through it and pushed his body to survive.


After the colostomy, the E. coli was out of his system. Then, Austin fought a six week battle to get his body functioning again. He managed to recover almost completely, but his digestive system would take a long time to heal and his kidneys still weren't doing well. He overcame blood pressure challenges, nutrition challenges, the challenge of learning to walk and feed himself again, and the final challenge of learning how to have fun like he used to.


After two months of waiting for his kidneys to heal, a biopsy was performed. The doctors determined that Austin's kidney would never recover. Eighty-four days after his first night in the Sacred Heart emergency room, Austin went to Moses Lake, WA for a few weeks before returning to California. Ben had accepted a new job, so he would have a new house and town waiting for him upon his return. Cortney and Ben were thrilled to have Austin at home with them again.

Since his homecoming, Austin has faced numerous challenges. Because he can't eat, he has to be fed through a G-tube inserted directly into his stomach. He also has had to go back to the hospital for a wide array of reasons, including colon reattachment, battling c-diff, flu complications, magnesium poisoning from his colonoscopy prep, needing colon growths removed, ringing in the new year with a bad cold, and chronic stomach problems. Three times a week, Austin must travel seventy miles to dialysis, where he sits completely still for four hours (on top of the countless doctor's appointments and check-ups).

Austin has recently been approved for a kidney transplant, and Cortney is the most likely donor. The kidney will allow him to have a nearly normal childhood, so he can grow and become strong without the pain and inconvenience of dialysis. Unfortunately, the kidney will not last forever (twenty years at the most), and he still has many challenges to face.

Even with insurance, Austin's medical costs are substantial and ongoing. To avoid becoming one of the many familes that are not able to financially survive the impacts of end stage renal failure, Cortney and Ben Jones have partnered with the Children's Organ Transplant Association (COTA) to help raise funds in Austin's name. He and his family can use the funds to help cover transplant-related expenses.

Austin and his family have seen the best this world has to offer. Friends, family, and many different organizations have stepped in to help in countless ways. This love and selflessness has sustained the Jones family and given them the strength they've needed to persevere through the trauma. Despite the hardships they've experienced, Cortney and Ben fully believe it when they express, "We are all so very blessed."

We are in the process of getting started with COTA and will shortly have a web page for Austin's fund-raising efforts. We will post that soon. Here is the temporary donation page, thanks!
http://www.cotaforaustinj.com/