Josiah Hayden's Medical Journey
Organized by: Stephanie Hayden
Josiah's Checkup June 6, 2016!!
June 06, 2016
Our son Josiah Hayden is a goofball. Anyone who has ever met him will tell you that. We picked him up early from school one day in October of 2014 (he was 12) with flu-like symptoms that continued for several days. After the third day of unrelenting fever, we felt we should take him to the doctor. That was when we noticed the severe atrophy in the scapular region of his left shoulder as well as slight swelling in his upper left arm. After baffling the doctor with his symptoms, he was placed on a broad spectrum antibiotic for what we assumed was a muscle infection.
Though his fever finally ended after two weeks, symptoms of lethargy, loss of appetite (he lost 15 pounds in three weeks), and the atrophy continued. His pediatrician sent us to a physical therapist who immediately told us she believed he had brachial neuritis, also known as neural amyotrophy or Parsonage Turner Syndrome (PTS), a very rare neuromuscular disorder. We continued with physical therapy and were referred to a pediatric neurologist who performed many tests on Josiah, including brain and spinal MRI's and a lumbar puncture, or spinal tap, as well as genetic testing. Most of these tests were not covered by our insurance, but we were not going to do this without all the answers we could find. All tests confirmed that he had PTS, but his symptoms were improving, so there was no definitive course of treatment.
Over spring/summer of 2015 his symptoms continued to improve and we were able to travel to Florida for our daughters' wedding. But by October of 2015, his symptoms began to decline, and his arm began to swell again as it had several times before. We saw his pediatrician several times, he was given oral steroids to reduce the swelling, and yet his arm would continue to swell more and more.
During the month of November 2015 we went to the emergency room and received more, stronger oral steroids for the swelling. The swelling increased even more when the steroids ended, so we went back to the ER, he was given IV antibiotics and we were sent home. Within two hours the swelling on the back of his arm began to push out infectious fluid through a large abscess, and the next day the front of his arm did the same. The wound on the back of his arm continued to drain and never healed even into January.
During December, referrals were approved for both Lucile Packard Children's Hospital at Stanford Medical Center in Palo Alto and Shriners Children's Hospital in the same week. At Stanford he was thoroughly examined and put on track for an EMG, which tests the muscles affected by PTS to see how they are functioning and if they will likely return to full function. But they did not address the swelling or the open wound on his arm. Then two days later at Shriners, the door opened wide with answers we had been looking for. To make the rest of our long story shorter, he was finally diagnosed with Osteomyelitis, which most likely occurred BEFORE and CAUSED the PTS. Which means he has had a bone infection for over a year. This required surgery...a SIX HOUR SURGERY, which he had two weeks ago. We were here at Shriners for a total of 15 days, during which time he received excellent care including IV antibiotics. We came home last Friday with a 6 month round of antibiotics.
We were ready for smooth sailing, but this Wednesday I noticed that his incision was coming apart and looking angry. So I sent photos to the triage nurse, the Dr took a look and told us to get him back to Shriners ASAP. That was last night, and he had a 5 hour surgery this morning to remove more dead bone and infectious debris.
Friends, this has been and is going to be a long journey. We also have a ten year old, Jeremiah, at home who needs us. So my husband Larry is traveling back and forth to Oroville to care for him and keep him in school, take care of business, and run the home while I stay here with Josiah. Once we are discharged we will be making frequent trips to and from Sacramento, and needing hotel rooms, fuel, meals, childcare, etc.
The purpose of this fund drive is to raise funds to use specifically for expenses related to Josiah's medical issues and provide for our families needs associated with getting him what he needs. Thank you so much for all of your help and prayers. We are truly humbled and grateful.