Having CF means having trouble breathing, among many other things. Difficulty breathing is a daily part of Sara's life. Before Sara came to live with my aunt, she received only the very minimum amount of physiotherapy (physical and respiratory therapy). Introducing her to the different techniques was a major job in the beginning. Many tears were shed by Sara and her new Mom. Sara thought everyone was so mean and cruel! How could someone that says they love her make her go through so much?
We found that it helped to make therapy time a special time. We set up a reward system for Sara. We "rewarded" her with a small toy, watching a special video, extra playtime or stickers for her "Good Things I Did" chart. Each positive effort Sara made during her treatments was rewarded. She would cry when her bad behavior meant no reward, but we stuck it out. Soon Sara was participating more in her treatments until therapy time became just a normal part of her day.
Physiotherapy is a very important part of taking care of anyone with cystic fibrosis. It helps to prevent the thick, sticky lung secretions from blocking the air tubes. This allows them to breathe easier and helps to reduce infection and prevent lung damage. We use a 3 step treatment program with Sara. Before we start, Sara drinks a glass of water or a cup of warm broth to help soften the mucus. Then we start the 3 steps which includes breathing exercises, postural drainage and percussions.
Sara has gotten very good at doing her ACBTs (Active Cycle of Breathing Techniques) by herself. This technique is a breathing exercise that consists of deep breathing to expand the chest, forceful exhalations and breathing control. Sara takes a deep slow breath and holds it for 2-3 seconds and then releases it with a huff. Actually, this has become a game with her. She loves to challenge everyone to a "huffing" contest!
Next comes the postural drainage and percussions. Since postural drainage is dependent on gravity, there are several different positions that Sara can lay, depending on where the mucus is building up. While Sara is laying in this position, we begin the percussions. There are several hand held devices for doing the percussions, but we prefer using our cupped hand. We fold a towel and lay it on the area we will be working on to make it more comfortable for Sara and then start a round of "chest pounding". A strong cough is encouraged after each position to remove the mucus.
The length of Sara's treatment sessions varies according to how much secretions are built up. On days when there are few or no secretions, we may only need to do it once or twice a day for 10-15 minutes each time. However, it could take as many as 4 sessions a day and as long as 45-60 minutes for each treatment if there are a lot of secretions built up. Sara seems to respond to the treatments better if we schedule them before meals and at bedtime.
As you can see, much of Sara's day is taken up with treatments to make her every day life a little easier to live. Sara is now such a happy, well-adjusted child that fills our life with love and joy.
I hope by sharing Sara's story, more people will get to know her and fall in love with her. Maybe they will realize what a CF child's life is like and find ways to help the many children with this disease. At this time, there is no cure for CF, only treatments that may prolong their life and make every day living a little easier.
Published by Shirley Adkins
Most of my adult life has been spent in nursing. I love to research any subject and learn new things. I love to write, although most of my writings are done strictly for my own enjoyment and ends up being st... View profile
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