After recovering from being sick, Thomas began feeling tingling in his hands and feet. He talked with a nurse, who mentioned Guillain-Barré Syndrome. She told him that if the tingling moved up his legs, he needed to go to the ER. Finally, we did go to the ER, and they seemed to think nothing of it when he asked about GBS. They sent him home, though he was very weak. He tried using a walker; he fell several times. The sensations did not exactly move up his legs, but he kept getting weaker and weaker. Four days later, on July 18, we realized he no longer had control of his legs. We had to call EMS to take him to the ER, because there was no way we could get him into a car. I heard the emergency room doctor question Guillain-Barré, but said it was really rare. We were later told that GBS actually only affects 2 out of a million people. It begins in the feet and advances up the body; once it reaches the head it usually plateaus. When treated properly, it then begins improving. In the beginning, the doctors thought Tom's sodium was the problem; his sodium was low enough to make him lose muscle control. They began running tests on him and mentioned there was something going on in his spinal fluid, but they did not explain what and acted as if they didn't know exactly what was wrong. They began discussing transporting him to a larger hospital with a larger neurology unit. Four days later, on July 16, they suddenly transported him. The next morning, at Novant Main, the neurologist told me Thomas had Guillain-Barré Syndrome. When his muscle control did not return as his sodium raised, the doctors knew something else was going on. They told me there was protein and elevated white cells in his spinal fluid. Thomas' nerve endings were also lighting up on the contrast scans they did. As GBS travels up the body, it affects so many functions we take for granted. Once it travels all the way up it usually plateaus and improves. The improvement travels back down, so the legs and feet are the last to recover. (We later were told it was the larger muscles that are last to recover. Often GBS seizes the lungs and patients have to be put on a ventilator--we prayed Thomas would not have to be put on a ventilator. On his worst day, July 18, he could only barely wiggle his fingers and toes. He could not move his arms or legs. He could really only lift the fingers on his left hand enough to press the pancake, to call the nurse. He had no core muscles any more. His diaphragm muscles were weak. He could breathe okay, but felt like he couldn't because his muscles were weak, so the nurses gave him oxygen to make him feel better. His esophagus was affected and he had to be put on honey-thickened liquids so he wouldn't aspirate. He could not puff his cheeks with air and the muscles around his eyes were weak. His face looked droopy-like because he could not move his eyebrows and forehead. Though he was able to talk the entire time, his speech sounded weak and not as clear and crisp as it normally is. He had pain all over his body because his nerve endings were inflamed. When I barely touched him he told me, "It hurts." It is so difficult to be trapped in your own body with no control and to have to depend on someone else to do everything for you. It is very scary and overwhelming. It is also difficult to watch your spouse or father have to be turned and moved and to be so helpless. Progress on July 23: He can now puff his checks, move his arms from the elbows down, and move his feet slightly. He lifted his left arm and was able to touch his nose. His diaphragm muscles are getting stronger. Today his face muscles began to work better. He was able to wrinkle his forehead. His speech sounds clearer and louder today. He is currently at Presby Novant Hospital in downtown Charlotte, Room 6806. He will be moved to an acute care rehab facility, Carolinas Rehab in Concord, on Monday or Tuesday--so he will be much closer to our home. Progress on July 26: We were told today that Thomas will not be moved to a rehab facility until Wednesday. We will stay at Presby Main until then. Progress on July 28: We received word today that on Thursday at 3:00, Thomas will be moved to Encompass Rehab, in Rock Hill. Progress on July 29: Thomas is now at Encompass Rehab Hospital in Rock Hill. Progress on August 3: Thomas has been making small advances each day. The physical therapists say he is gaining strength and his muscles are responding well. They seem to feel he is progressing well. Progress on August 7: Thomas is progressing with his therapy but is having trouble with pain and other issues, due to the fact that his internal organs were somewhat affected and slowed down as a result of the Guillain-Barre' Syndrome. Progress on August 12: Thomas will be coming home next week. There is a lot to be done to prepare for him to be home. Please pray that everything falls into place. Please pray that the physical issues Thomas is having will resolve. Please pray that we can get the house prepared. Progress on August 17: Homecoming soon! Please pray that everything falls into place.-that all the equipment and supplies are in place and we have a smooth transition home. Thomas stayed in the hospital for 2 1/2 weeks, then in the rehab hospital for 2 1/2 weeks. He was away from home from July 13-August 18. Being home was quite an adjustment to make. We've had a lot of things to move and rearrange. Hospital beds, wheelchairs, lifts and other medical equipment takes up a lot of space. Thomas came home on August 18. We had a lot of adjustments to make. August 23 post said.: Thomas is home. Please pray for us as we adjust to this transition. Once he came home, there were not many posts made as often, because there was no time to post. August 30 post said: It is difficult to believe that it is the end of the month. Thomas and I feel that we have missed the entire summer. Thomas can now lift both of his arms above his head. His mouth was also slightly off on the left side, and that has improved in the last few days. He now he has his old smile back. He is also able to better use his cell phone without dropping it; in the past, he has had trouble dropping it. His core is also beginning to strengthen. We are thankful for every little improvement Thomas makes. We are also very thankful for the prayers for our family. September 18 said: In the course of this journey, some days are more difficult than others. The process is slow, but then we look back and see the improvements. Thomas is now able to slide himself into the wheelchair, using the sliding board. October 7 said: Over the past week, Thomas has gained a good amount of strength in his trunk area. He can now transfer himself on the sliding board, with a little help. This makes getting in and out of the car and transferring into the wheelchair much easier. Yesterday, he pretty much pushed himself into a standing position, with minimal assistance. I had stepped out of the room and the physical therapist called me in for him to show off for me. He pushed himself up with the aide of the walker and a tad of help from her. He used his feet and was able to put each foot forward twice and touch a bar in front of him! We are so very thankful for this, as this is the beginning of walking again! We thank the Lord for Thomas' progress. October 18 said: Thomas has now taken a few steps with the help of the physical therapist! We praise God for allowing him to begin the process of walking. We are grateful for the cards and words of encouragement!
We have officially begun a new chapter in our family life, as Thomas has left his position as full-time pastor at First Baptist Church Midland and we have made a move. We would appreciate your prayers for our family as we undergo this transition. If you would like our new address, please privately message or call us and we will give you that information. Tomorrow also marks an anniversary for us, as we celebrate 36 years of marriage. We feel very blessed!
It has officially been almost a year and a half since Thomas first developed Guillain-Barre'. He is still making small progress and can sometimes walk without a cane, though sometimes his coordination is still a bit off and his muscles have not returned to their usual strength; this is most apparent when he is tired or sick. The doctors say that usually things are pretty much the way they will stay at a year and a half. He just recently had a visit with the neurologist, he has made small progress in the past few months, but at this point, things are most likely how they will be. Progress is much slower and more difficult to see after the year mark. We ask that you pray for his continued progress.
We are truly thankful for God's provision in our lives. The past 2 years have been rough on our family, as we have experienced severe illness, death, and major changes in our lives. We are thankful for our family, friends, and sometimes people we don't even know very well, who God placed in our path. We are thankful for those who have rallied around us and supported us. Your calls, cards, and words of encouragement have been very meaningful to us. Some days those words of encouragement have helped carry us through, when we felt very beat down. As we have experienced all of these changes, we have also experienced God's provision for our every need and a closeness and dependence on Him and each other. We pray as you begin a new year that you will put your full trust and reliance on God for all your needs, and as you do, you will draw closer to God and to your family and friends. When the world seems to fall apart around us, God is always present to meet every need in our lives, no matter how small or large those needs may be. He provides down to the small details. He provides in ways that we, as humans, could never imagine. Only our God can do what He does. We never cease to be amazed at God's creativity in the way He provides and works out little details. God is truly Immanuel, God with Us. If God is with us, who can stand against us? We are truly thankful for the gift of Immanuel, present in every detail of our lives. We pray you have a blessed new year!
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