January 8, 2010 was like any other day for the Conley family of five. After attending a basketball game at Wright State, Javan Conley drove home with his two sons in the back seat doing what boys do best, horsing around and burping. When they got home, Ethan, 8, began complaining that his stomach hurt and Javan said what many fathers might’ve said; “you shouldn’t have been forcing yourself to burp in the car!” This stomach ache was just the beginning of what would turn out to be a very frightening journey ahead for Ethan and his family.
As the evening went on, Ethan’s stomach did not get better and he spent most of the evening throwing up every half hour. The next two days Ethan started to feel a little better but was still extremely weak. Javan and Rebecca, Ethan’s mom, decided to keep him home from school that Monday to give him one more day to rest. By late afternoon Ethan began complaining about his legs hurting, but Rebecca and Javan thought that it might simply be dehydration and the fact that he had been on the couch for the last few days.
At the time, Javan was the coach of Ethan’s basketball team. That Monday evening he went to practice leaving Ethan at home with Rebecca and their other two children and told them to call if anything became worse.
“About half way through practice Rebecca called me and I could hear Ethan screaming in the background,” says Javan. “I immediately left practice and headed home. We both knew there was something wrong and that we needed to get Ethan to the hospital. Even just putting Ethan in the car was difficult because simply touching his legs gave him excruciating pain.”
Javan, Rebecca and Ethan arrived at The Soin Pediatric Trauma and Emergency Center at Dayton Children’s and explained the situation to the physicians. They immediately began taking his vitals and eventually put him on an IV drip to help with his pain. Ethan was admitted and taken up to the Almost Home unit.
“That first night was painful,” says Javan. “None of us could sleep and the only thing that kept Ethan calm was rocking his legs back and forth. The next morning the doctors were still trying to figure out what was wrong. At this point they didn’t know if it was food poisoning, the flu or something much worse.”
On Tuesday a blood test was ordered for Ethan. His test came back with a creatine phosphokinase (CPK) level of 50,000. The normal level is anywhere from 60-200. The highest that doctors at Dayton Children’s had ever seen was 16,000, making Ethan’s case especially unique.
After seeing the high CPK levels, the resident dealing with Ethan’s case called in James Lehner, MD, an orthopedic physician at Dayton Children’s. After assessing Ethan’s results, Dr. Lehner immediately transferred Ethan to the pediatric intensive care unit (PICU) and ordered a pressure test and ultrasound.
“I asked Dr. Lehner, ‘what does this mean? Could he lose his legs?’” says Rebecca. “When he responded ‘worse’ I knew it was now a matter of life and death.”
“Ethan was diagnosed with an extremely rare virus called viral myositis with rhabdomyolysis,” says Patricia Abboud, MD, pediatric intensivist at Dayton Children’s. “This involves a rapid breakdown of skeletal muscle due to injury to muscle tissue. This breakdown of the muscles clogs the kidney and can result in kidney failure.”
Due to the severity of his case Ethan was cared for by 8-10 doctors and nurses during his stay in the PICU. This included Vipul V. Patel, MD, Abiodun Omoloja, MD, Leonardo Canessa, MD, Patricia Abboud, MD, Aniket Joshi, MD, and Amit Vohra, MD.
Dr. Omloga determined that Ethan would need to be placed on dialysis because his muscles were breaking down and clogging his kidneys. The doctors were doing everything they could to keep Ethan alive. This included blood transfusions, a PIC line and eventually a trache. The doctors told the Conley’s that by giving Ethan a trache, it would take some of the stress off of his body allowing the machine to breathe for him.
“Seeing my son with a trache was extremely emotional,” says Javan. “I thought, right now he’s on this breathing tube, but are we soon going to have to decide to sign papers to take him off of it?”
Each day the doctors continued to check Ethan’s CPK levels and each day they continued to rise. By the time they got up to 700,000 they stopped checking them as often because at that point it didn’t make a difference.
Due to the severity of his condition and the medicines he was on, Ethan doesn’t remember much of his time at Dayton Children’s. However, he does remember relying on his faith to get him through the toughest parts. “The scariest part was when they had to put all of the tubes inside of me and when I learned that I had such a rare virus that I might not survive. But I knew God would do everything he could to make me better,” says Ethan.
Ethan’s legs were swollen to twice the size making him unable to walk and due to the number of different medicines he was on he would often have mood swings.
“When Ethan finally realized what was going on he became very depressed. It was gut wrenching,” says Rebecca. “One of his biggest concerns was that he was going to fail school. Once his teachers came and visited and told him that he wasn’t going to fail, he started to act more like his normal self.”
Ethan spent a total of 19 days in the PICU. He was finally taken off of dialysis and was transferred to another area of the hospital where he began physical therapy. In order to make this process a little more fun he was even given a basketball hoop in his room where he would shoot hoops with the doctors and nurses.
“I really liked the nurses at Dayton Children’s because they talked to me and explained what was going on. They always told me jokes and played games with me to make me feel better,” says Ethan.
On January 31, Ethan hit a major milestone. He was able to get out of his bed and take three steps.
“Watching him take those three steps was a huge moment,” says Rebecca. Javan adds that “Ethan was so motivated to take more but at the time he just couldn’t. But he never let it discourage him, he just kept trying.”
Finally, on February 12, a month after coming to Dayton Children’s, Rebecca and Javan were able to take Ethan home. Two weeks later Ethan went to join his basketball team for their end of the year tournament game. Everyone wore bracelets for Ethan that had Philippians 4:13 on them “I can do all things through Christ who strengthens me.” Ethan was able to get into the game for a short period of time and when he scored a basket, the crowd stood up and erupted in cheers!
Ethan has made a full recovery from the virus and was able to go back to school towards the end of March that same year. At his four month checkup after leaving Dayton Children’s, he was told that there was no longer anything medically wrong with him to hold him back from doing anything he would normally participate in such as sports.
One of Ethan’s heroes is Kurt Coleman, safety for the Philadelphia Eagles. Kurt was a big supporter of Ethan when he was in the hospital. He found out about Ethan thanks to a message that Javan sent him on Facebook. Kurt had made time to come visit Ethan but was unable to. Instead he sent Ethan a care package which he called the “fighter package.” Ethan was extremely encouraged by Kurt’s thoughtfulness and hopes to have the chance to meet him someday to say thanks.
Today Ethan is a happy and healthy 11 year old who is ready to enter the 6th grade at Northmoor Middle School. Ethan hopes to someday become a NBA or NFL star.
“We are beyond thankful for the care that Ethan received at Dayton Children’s,” says Javan. “These doctors and nurses are sacrificing their own time with their family to save someone else’s. The fact that we can drive down the road and get the best care in the world is amazing.”
“Dayton Children’s really is a state of the art facility. It feels like a home and everyone there really cares for their patients. It amazed me every day that everyone went above and beyond what they needed to do to take care of Ethan and our family,” says Rebecca.
During the next year, Ethan will have the opportunity to share his story as an ambassador for Dayton Children’s.
“I’m really excited to be an ambassador this year because I not only get to be an ambassador for Dayton Children’s and share about my experience there, but I also get to be an ambassador for Christ because He is the one who got me through this,” says Ethan.
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