Hey there, I’m Amanda Saye and this is my website.
I don’t know where you found me, but I’m glad you did.
On this blog, I document what I’m doing to create my new life and business. If you dig back, you can find information about my struggle with PCOS, weight loss, and infertility. Moving forward, it’s all about how we’re surviving our new normal after my husband became catastrophically disabled in 2016.
In Spring 2016, my husband and I were living a normal life with our two young children. He was a 10-year employee of a major digital publishing company (rhymes with Deb MD) and together, we 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. My husband, John, had been stricken with Guillain-Barré syndrome.
Guillain-Barré 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 I did not know if he would make it through the night. John 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-Barré 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. I 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, our children, ages 6 and 8 spent the summer under the care of their grandparents in south Georgia. This allowed me to travel back and forth between the hospital and my kids – a distance of over 200 miles – to spend as much time as I could with both the children and my husband. I 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.
John’s parents kept busy with their grandchildren but also worked diligently on their home to make it ready for John and our family to live with them full-time. John’s employer released him and it was clear that our home in Atlanta would be lost too.
You see, not only can we not afford the home, we can not live in the home due to John’s disability. Due to the layout of the home, extensive and expensive renovations would be needed just to get John physically into the home (reinforcing floors, widening doors, etc). Add in the lack of a full bathroom on the main floor and the lack of family support locally and the best thing we could do was move in with my husband’s parents.
John’s parents 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 his parent’s home in early January 2017.
Even now, over a year 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 costs more than $35,000. We have been fortunate enough to be able to pay off most of the bills thanks to budgeting and the gifts of friends but there are ongoing expenses for his care including special medical supplies and therapists. John and I also employ a home health aide once or twice a week to provide respite care.
We have the hope of a full recovery. We have the hope that one day, this will all be in the past and we will be thankful for the lessons learned. Meanwhile, we are working to recreate our lives.
We do not want to go back to the regular rat race. We want to do better, be better, more fulfilled people.