Tuesday, May 6, 2014

Puff, Puff, Shake, Shake...this is what it takes to clear lungs

Now we come to the wonderful world of treatments. We spend about an hour of our day on treatments right now. I know that doesn't seem like much, but when you are tied down to machines shaking you up and blowing smoke in your face it seems like forever. And when Zach gets sick, treatment times go up.

Most kids do some sort of chest therapy, either with a vest, a pep, acapella, or via hands on chest percussion.

This is what the vest looks like. It is attached to an air compressor. When this machine (there are other types) is turned on you have to set the frequency to which it vibrates (slow to fast), the amount of pressure it vibrates with (lighter or harder) and how long it goes for (we do 20 minutes at a sitting). It is recommended that you start at a lower frequency and pressure and stop every 5 minutes to do huff coughs (will explain those later) and work your way up the recommended frequency and pressure.

Zach rocking his camo vest

As you can guess, it is not always easy to haul these things around. Our machine weighs about 20 pounds, it's heavy and bulky and a pain in the butt to carry on trip. So we opt for a simpler method of chest therapy when we travel or when Zach goes away to camp in the summer.
This little guy here is called an Acapella. It is small and light-weight and fairly easy to use. This is what Zach takes when he goes away. They breathe through this device and it causes vibration on the inside of the lungs. Zach breathes into this device for 10 minutes. It's still not any fun for him, but it is easier for him to deal with because he is not tied to one spot.

On top of the fun of the chest therapy we also spend a lot of time doing inhaled treatment via the nebulizer. The nebs take just about as much time as doing the vest. Most of the time you can do the nebulize treatment while doing the vest, which cuts down on treatment time. There are a number of different medications they take through nebulizers. Zach is currently on Pulmozyme and albuterol.  Pulmozyme is a very expensive CF medication that helps break up the mucous in the lungs. This is one of our most important medications. In the past we also had to take antibiotics (to fight off pseudomonas) via neb and a hypertonic saline solution. Zach hated the hypertonic saline nebulizer. He said it burned his lungs. I have heard this from a lot of people. We found a great way to get hypertonic treatments with out actually doing them....SURFING! Being in the ocean is like getting a natural saline treatment, and its fun! So now we use the ocean as a treatment too.

While treatment times are no fun, they are an important part of a CFer's life. Without the daily treatment regime the junk in their lungs would just sit there and breed bacteria. It would cause infection after infection after infection.  It is a daily battle in our house to get Zach to do these necessary treatments. He absolutely hates them. They take too much time, they hurt, they're boring.....and on and on. He has been lucky so far that he has only had to battle psuedomona's infections a couple times, but he does have a severe MRSA colonization in his lungs. We battle flares ups on a regular basis. If he would just learn to do the treatments he needs to do, we would most likely have less. It helps that he is in the ocean on a regular basis, but it's not enough to just break the junk up, it needs to be cleared out and that is what he is missing.

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