Kevin’s Story
Kevin was an 18 year old patient, followed on Fegan 2 for many years. He had multiple medical problems among which were cerebral palsy, seizures, and asthma. He was not able to walk and his speech was limited to sounds. It was difficult to evaluate his cognitive capabilities, since his physical disabilities were so great. He made many, many trips to Children’s Hospital accompanied by his mother and personal care assistant.
Many years ago, I learned an unforgettable lesson from Kevin. One day, I saw him sitting in the waiting room with his mother. I was behind the desk, quite busy. I told myself that I would spend time with him when he was finally in an exam room. A short time passed, and his mother approached me. She told me that Kevin had seen me but I did not acknowledge him. He looked at her with surprise–and he cried. I went to him and apologized. For the rest of his life, until he died this summer, I always made a point of going to him whenever he came to Fegan 2, for a brief chat. He taught me that recognition and acknowledgement are critical. No matter how busy I would get, if I saw Kevin, I was soon by his wheelchair, wherever he may be. I have used this example when I mentor nursing students and any staff. Severe physical disabilities do not necessarily mean cognitive dysfunction. Yes, someone may indeed be mentally disabled or not understand many conversations; yet, I ask students how they would feel if they were trapped in a body physically dysfunctional, with a brilliant mind and no one spoke with them. It is a win-win situation always, since parents are appreciative that their children are respected, no matter their capabilities.
Kevin developed a very large wound this spring, necessitating a hospitalization with a vacuum assisted closure (VAC) dressing and peripherally inserted central catheter (PICC) line. His mother brought him in weekly for a VAC dressing change after his discharge. My long term association with Kevin and his mother made them feel comfortable at these visits. It was Kevin on whom I did my first supervised VAC dressing. I remember his mother hugging me after I took out his PICC line. She told me she was so excited that she would be able to sleep through the night and not have to get up to give him his medication via that line.
A week later, Kevin died in his wheelchair, watching TV one evening. He had been doing so well. His wound was well healed. He no longer had a VAC. His mother called me to tell me what had happened and asked that I notify the orthopaedic surgeon and neurologist who cared for Kevin. She said she thought his body “just got tried”. He had been through so much.
I attended his wake and cried with his mother. I had known him for so long and I will miss his beautiful smile and chuckles. His mother told me she had racked her brain, thinking she had missed something. I told her that she hadn’t missed anything, that she had cared for him so meticulously. I reminded her of what she had told me, that he “just got tired”. And I reminded her also about the lesson he taught me. She had often told others about the day I made Kevin cry. I never did that again, to be sure. The day at his wake, I was the one who cried. It was an honor and a privilege to have cared for Kevin and to have known his wonderful mother. My nursing practice has been enriched by patients like Kevin.
By Carol Nolan, RN
Alleviating Anxiety in a Pediatric Setting, or “The Bunny”
Even as adults, a trip to the doctor’s office can be anxiety provoking: the cold feeling of the exam table, the vulnerability of wearing a “johnny”. For children, this anxiety can be greatly increased by a variety of factors such as: past experiences, lack of control, fear of the unknown, and developmental level. Younger children are especially vulnerable: their cognitive abilities and coping mechanisms are limited. In our busy outpatient orthopaedic department, we are frequently called upon to remove pins, staples, and sutures in our pediatric population. Usually there is not time for lengthy preparation, and our nursing staff quickly assesses each patient and utilizes appropriate and simple coping exercises like deep breathing and distraction. Recently, however, we had the time and opportunity to plan a developmentally appropriate and family centered intervention in advance.
Alyssa is a beautiful and independent six year old girl with cerebral palsy. She had a tibial osteotomy, (a procedure to improve leg positioning for walking), with subsequent hardware removal and postoperative healing issues. Her frequent visits to our clinic helped us build a trusting relationship with her. One day she presented for a drain removal with staples to come out one week later. When Alyssa saw the staples, her anxiety was quite apparent as she burst into tears and begged us not to take the staples out. This was very unusual for Alyssa who had frequent dressing changes without ever crying or complaining.
We felt Alyssa’s anxiety may have stemmed from fear of the unknown. She had never had staples removed before. We wanted Alyssa to experience the concrete act of practicing the procedure to increase her understanding, control, and confidence, and lessen her anxiety. We had previously noticed that she delighted in any participation we could allow her. We found a cuddly stuffed bunny and wrapped a piece of paper with staples on it around the bunny’s leg. We practiced taking the staples out of the bunny beforehand to make sure the staples would come out easily and that Alyssa would be able to take them out herself. Alyssa’s mother, who knows her best, also thought this intervention might work.
The day of her staple removal, her mother had given her medication prior to coming in, though she never felt this was effective. Alyssa unwrapped the bunny’s dressing and then avidly tackled the staples. We had to help her with the first few but then she was able to remove the rest successfully. When it came time to remove her staples, her anxiety level was noticeably lessened. She bravely held her mother’s hand, and we talked to her and counted with her. The procedure went quickly and Alyssa sailed through it as we had hoped. We all applauded her and there were many high five’s. She was so proud of herself and we of her. Shortly thereafter, she said, “Carol, that didn’t even hurt!” We nearly cried. Our plan had worked. She had control and was successful. We feel that this nursing technique was effective in alleviating her stress.
Alyssa’s own personality and resilience, the trusting relationship she had with her nurses, her mother and sister’s presence and support during the procedure, the increased knowledge and control she had during the procedure, and the advanced notice we had to prepare thoroughly for this experience all played a part in empowering Alyssa to cope well during this procedure. Alyssa was able to find pride, happiness, and accomplishment in what might have otherwise been a traumatic event. Alyssa left clinic happily that day with her new bunny!
Carol Nolan, RN, BSN
Muriel Corbett, RN, CPN, MS, CCLS