Well Saturday night as I was doing Brandon's nightly treatment I just wasn't feeling the vest vibrating the same. I started noticing that the whole vest itself didn't inflate. For many of us parents to a child with CF we count on equipment like this to help aid us in the daily demands of therapy. Knowing as they grow and get to a point of wanting independence we have a tool for them to utilize on their own. They luckily do have many options for the percussion treatments aside from the good old traditional method of what many parents refer to as "beating their child" or hand CPT. Either way a method of some sort has to be done twice daily and more when they are sick. When Brandon was younger he detested the hand CPT as we felt awful we also knew what must be done. You learn ways to restrain your flailing and angry baby and get whatever CPT you can in. I always felt lost as to how I could help this not be such a negative experience for him. At the right age and size he was approved for a vest and it has been a God send for sure! So I am sure you could imagine my horror when this treasured appliance broke! I was on the phone in a matter of minutes, after trouble shooting all my options, to the manufacturer. They were great and with no questions told me another one would be here on Thursday(today) although I am patiently awaiting the UPS truck I am also getting that feeling curl up in my stomach thinking it may not come.
I am sitting here reflecting on the days up to now. I do have to admit that its not as big of a fight as it once was, but he still will try and stop me by pulling my hand away or telling me No and trying to get away from me at all cost. He refuses to get into positions that are part of the treatment and will not get into the downward position at all. I was frustrated in thinking its not by the book, its not good enough, and so on. I am lucky to have a great source, my cousin Rachael who has CF and is my go to when I really want a straight answer from one who "knows" what it is like and what it feels like to them. She said to not stress over it so much and get in what I can. As I continued with that thinking last night I felt a little better about it but still just am not seeing as good of results for him. It hit me, I play around often with alternative methods of bouncing on a ball or activity for him, even swimming in grandmas pool gets him hacking up a little junk. So I thought time to just take what the Lord gave me and put it in as a true treatment. This morning we started with the albuterol and then I did what ever hand CPT he would allow me, when he started getting frustrated and pushing my hands off him and tell me No I moved to the ball and bounced him and tickled him and what ever else I could do to keep him working the lungs. He produced a few good coughs and I was pleased, very pleased! I am taking some of his birthday money to buy a small trampoline for bouncing as therapy for him as well. I guess for the longest time I wasn't committing to this idea because its weird to think that we are doing good and having fun. I guess it is possible. The Swedish people have some great ideas for airway clearance. Thank you to Kat East of the Blooming Rose Foundation for educating us on her experiences of other options.
I have always pushed how much CF nutrition needs to change and have been working hard at a book and other ways to get that info out. I have to think that many things can change and be done differently. Airway clearance can be fun and there are many ways to implement it into our child's lives.
I guess this brings me to a thought of positivity! Why can't we be positive in a negative world. Why can't we accept what the Lord has brought this into our lives and enjoy each day for what it is. I really try to stay connected to the "CF world" but I find to often I find negative sources that feed into the fear of it all. I understand people are desperate with this disease and want all people to know about it, support and help cure it. But the reality of that is not so. There is no point in walking around with a negative angry and at times selfish heart. I can not control what others do and certain things form happening in my life, but I can control how I think and what I say. You can make a difference with a positive attitude in a negative world. I am reminded of many people I have crossed paths with and I find people with true joy and positivity have much suffering in their lives. I find a thing as my childs CF as an opportunity to learn and bulid my character, not break it down. I am no good to Brandon or the rest of my family if I am negative and angry.
well said Amber!
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