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April 2016 , John Saye, the son of Lee and Susan Saye of Tifton, GA, was living a normal life with his wife, Amanda, and their two young children. He was a 10 year employee of WebMD and owned a home in west Atlanta. Then, within the course of a month, he was completely paralyzed and on a ventilator fighting for his life. John had been stricken with Guillain-Barre syndrome.
Guillain-Barre Syndrome (GBS) is an autoimmune disease in which your immune system attacks your peripheral nervous system causing paralysis starting with your feet and legs and moving up your body. In most cases, the person feels weakened like they have the flu or a bad cold and they have some weakness in arms and legs but quickly recover. In the very worst cases, the person is completely paralyzed and swallowing and breathing is affected.
John got the very worst kind of GBS. He was unable to swallow, was put on a ventilator and drifted in and out of consciousness. There were several times when his wife did not know if he would make it through the night. He spent 23 days in the ICU at Navicent Hospital in Macon, GA where doctors gave him massive doses of immunoglobulins to help his body stop the attack on his nervous system and start the healing.
He was then moved to Shepherd Center in Atlanta. Shepherd is mainly known as a leader in spinal cord and brain injury rehabilitation but they are also specialized in other neurological conditions like Guillain-Barre Syndrome. They began his physical and occupational therapy immediately even though it was clear he was still ill and was on a ventilator and feeding tube.
He got worse and was weaker and weaker. He had numerous episodes where his blood pressure and heart rate would drop. But through each episode, they never gave up and would not let his family give up hope. This was the way severe GBS was and if John could hang on, it would get better. The doctors told his family that until John hit bottom - wherever the bottom was - that he would then begin to improve.
After spending his 43rd birthday and nearly two months at Shepherd, the day came that he actually started to get better. His wife noticed first that his eyes, which had been dull and full of pain for many weeks, brightened. Then the doctors confirmed that his blood panels were improved. Therapists saw the changes too and noted that he was no longer losing muscle tone. Respiratory therapists and his pulmonologist also noted that he needed less help from the ventilator and was breathing more on his own with better oxygen levels. There were small problems that cropped up such as when his feeding tube dislodged and emergency surgery was needed to repair and "wash out" the area. But overall, he continued to improve.
Meanwhile, his children spent the summer under the care of Lee and Susan. This allowed John's wife, Amanda, to travel back and forth between Atlanta and Tifton - a distance of over 200 miles - to spend as much time as she could with both her children and her husband. She also went through hours and hours of training in the classroom and hands-on to learn to take care of John when he came home.
Lee and Susan kept busy with their grandchildren but also worked diligently on their home to make it ready for John and his family to live with them full time. John's employer released him and it was clear that the home in west Atlanta would be lost too.
The Sayes had reinforced floors installed that could handle having a 350-pound power chair run over them. They enlarged and outfitted the master bathroom so that it was completely accessible. They also had a stairlift installed so that John could eventually get upstairs.
Through time, hard work, and the grace of our Lord, John improved and was weaned off the ventilator. He came home to Tifton in early January 2017.
Even now, two years after this all began, John has a long way to go. He is bound to a hospital bed or a power chair. The power chair weighs more than 350 pounds without him in it and cost more than $35,000.
The bills have been astronomical and there are ongoing expenses for his care including special medical supplies and therapists. John and Amanda also employ a home health aide once or twice a week to assist Amanda and to give her some respite.
It is our hope to keep our friends informed and involved as John gets better.