New Treatment with Airway Clearance Vest

Last week we were introduced to Valentino’s new part of his daily treatment regimine–the airway clearance vest. I met with a rep, Suzana, from Hill-Rom to learn how to use this crazy vibrating vest. Suzana was very thorough and helpful in answering all of my questions. I was so impressed that, for one of the first times, an experience with the medical system went smoothly and was very convenient to our life. Suzana came to our home and we had a relaxed and comfortable setting to learn about the latest, and potentially overwhelming, part of Valentino’s treatment regimine. As it turns out, the vibrating vest is pretty simple to use and Valentino is willing to comply with the treatment regimine as long as he gets to watch Elmo movies.

Valentino checks out his new contraption

Valentino is starting with 10 minutes at 10MHz and then 10 minutes at 12MHz (this is basically the speed or strength that the vest vibrates at). Suzana recommended the second 10 minute session at 14MHz. But, the vibration was so strong that Valentino immediately went into panic mode and started screaming and crying while desperately trying to unhook the vest. So, after that…..we decided to stick with going to a maximum of 12MHz.

Now, the question of where to put this huge machine with its long tubes attached to the vest?

I cleaned out my bedroom closet and it is now Valentino’s medical station. I have a cart on wheels in the closet. When it’s time for Valentino’s vest and nebulizing, I just roll the cart out, plug everything in, pop in a movie and away we go. We are using the nebulizer at the same time as the vest so that will really clear his lungs and get the albuterol into his lungs. So far it is early December and Valentino has not had a single cold or cough. His throat swabs have all come back clean from his specialist. I am so determined to get through this winter without any lung infections. (Of course, ALL parents of CFers share the same determination and sometimes the child still get a lung infection……).

Part of the determination to keep him healthy through the winter means that we can’t miss days of his therapy. Unfortunately, I already missed two days. When the specialists told me from the very beginning that it is so vital to make sure he gets his treatments every day…I was certain I would not miss a single day. And, I thought to myself, “WHAT kind of a parent would SKIP therapy?!?!” Oops. Yes. A busy parent. Here I am having blasted through two long days of work, school for Romeo, dinner for the kids, violin practice for Romeo, bathtime and bed without even giving Valentino’s therapy a thought. I bolted up out of bed completely frantic yesterday morning realizing two whole days had gone by without even remembering Valentino’s therapy.

Now I have a big piece of paper on the fridge with bold ink that says, “DO NOT FORGET VALENTINO’S VEST AND NEBULIZER TODAY” 🙂

I think that will do the trick.

surrounding Val with love during his 1st Vest session. November 2010