Kelley's Journey
Facing A Rare Disease With Courage
by
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TICU is the thoracic intensive care unit. There are x-ray pictures of lungs hanging around all over the place. The staff is experienced in handling people with breathing problems. They had Kelley hooked up to all sorts of equipment. Going into her body were IVs and blood. Coming out of her body were various drains. However, she didn't appear to be quite as swollen, as she was after the hip operation. Since the surgery had been done on a Friday, I had Bob's companionship and support, while visiting during the weekend. We spent most of the time with Kelley, leaving for walks, or to eat, when the nursing crew had their work to do with her. Most of the time she was zonked! She was unable to speak, because she was hooked up to a respirator, through an opening in her neck. Even in that condition, she managed to mouth the words "thank you" whenever she was aware someone was doing something for her. A process of weaning her off the respirator took place during those two days, so she would be able to tolerate more surgery. On Monday, Bob was back to work, and I went to the hospital early. The doctors came in, and pronounced Kelley ready to go back to surgery. She was alert enough by then to be eager to be rid of the respirator. This time, I did my waiting in the visitor's waiting room. It was a large, attractive room with many chairs and couches in various groupings. In some cases, there were whole families sitting together, and then there were people like me, with their books or newspapers. The volunteer in attendance was the designated phone receptionist. The room became quiet every time the phone rang, and she would then ask for a particular family. While the right person went to get their call, people would start to talk again. My call came in about three hours. I didn't know how long it was going to take. I didn't ask. I reasoned it was worse thinking a call should be coming, and wondering why it was not. The surgeon said that Kelley was doing well. They had inserted a flexible trachea tube (T-Tube) that would keep her airway open. It could be taken care of through a small opening in the front of her neck. While it was only the diameter of a pencil, a small suction tube could be inserted to remove secretions. He planned to have her go back into the hospital in May so he could remove the tube to see if the trachea had any more stability by then, but he honestly doubted that it would. He went on to tell me that when he saw Kelley's trachea, he wondered how she had stayed alive. If he had known how serious the condition of her trachea was, he would not have given her the option of waiting until May for the surgery. It sounded to me that the man was genuinely sorry that he was unable to repair it completely.
CHAPTER SIXTEEN
Kelley was into the spring semester at school, when her other hip needed attention. After looking at the x-rays, her hip surgeon was noticeably concerned. We knew that he was reluctant to take Kelley into surgery again. His frown and silent thoughtfulness caused Kelley to sense his apprehension, so she pulled down the turtleneck on her jersey to expose the arm of her T-Tube. "What is that?" he asked, his frown turning into an expression of puzzlement. "I have a tube in my trachea now to keep the airway open," she explained. "She is no longer a surgical risk," I added confidently. "That's wonderful!" he exclaimed, as a smile spread across his face. "I don't want to take any time out of school," the patient hastened to advise him, "I will have it done at the end of the semester." He seemed to be studying her, as she spoke, "You know what needs to be done, then?" he asked, his eyes narrowed. "Sure, same thing," she said, sounding as casual as if she was making plans to get a haircut. The doctor stood back, hands on his hips, and said, "Well, Kelley, if you're willing to put up with the pain that long, it's all right with me." He glanced my way, and we exchanged a look of acceptance. She had made up her mind.
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About the Book
Kelley has lived successfully for 39 years with a rare disease called Mucolipidosis III. It has affected all of her bones and joints, her trachea and bronchial tubes. Despite many surgical procedures, she has been a positive power of example to many. At the age of 14, her year-end school report read in part, "Kelley manages extremely well despite physical problems. For such a young person, she has an incredible emotional strength. She and her family have a positive attitude toward her disability. When Kelley lacks motivation in school, it may well be that she is not feeling well, but is not making a fuss about it. She tunes in easily to other people, and is sensitive to their feelings and problems. She tries to help others. Kelley is a concrete learner and has sound common sense." Although she has earned a Bachelor’s degree in Psychology, her medical condition is so unpredictable that she is unable to work at a full time job. She volunteers instead. Despite an uncertain future, Kelley is an inspiration, consistently displaying a remarkable attitude while maintaining a strong faith in God; causing many people who know her to say, "Kelley is my Hero!"
About the Author
Denise Crompton has worn many hats in her life, with a variety of positions in a variety of professions. She considers her most important role to be that of wife and mother. Denise has been happily married to Bob Crompton for over forty years. Together they have raised four children. Their daughter, Kelley, has a rare disabling disorder. Denise has chronicled the many events that have taken place, as all members of the family have made adjustments, due to the demands made by Kelley’s condition. She hopes that by sharing their experiences, they will help others to keep knocking on doors, and praying for help, when seeking solutions to life’s challenges. Denise is a member of the National MPS Society. Her email address is: