Wednesday, June 22, 2011
The Vest. The craziest medical contraption I've ever seen for home use, and the one thing that's kept Parker so healthy!!
We got the vest back in May 2010 and have been using it twice daily since. Parker has gotten used to it by now, but at first it was a battle that usually ended in me holding him in some awkward position that would rival most professional wrestlers. Sometimes this still is the case, especially when having to give predisolone! Uh, that stuff is NASTY.
The Vest has been an intricate part in keeping Parker's lungs clear of stagnant mucus and building up on his lung walls. In normal healthy lungs, you have cilia that function and 'beat' many times per second as you breath in and out. You also have cilia in your ears and sinuses. They also assist in the coughing reflex. In Parker's lungs, or any child with Primary Ciliary Dyskenesia, these cilia either have limited function or a paralyzed completely. It is unclear yet how Parker's function, but they aren't functioning adequately at this point. So, the Vest 'beats' for him! It pulses air in and out of this vest at a very high frequency and squeezes his chest some to allow the 'beating' to work more effectively. Parker is on a ramp system, meaning he starts out on a low pressure/low pulse rate (level 1 pressure and level 10 pulse rate) and then ramps up to level 4 pressure and 16 pulse rate over the course of 10 minutes, and then he stays at this high rate for another 10 minutes. This is called a Michigan style if I remember correctly, but this also allows Parker's chest to get 'comfortable' before the real work begins!
We have noticed a significant difference in Parker's ability to cough during this process, and its a good 'huffing' cough that allows him to clear his lungs. During the day and between treatments, he is coached to 'cough' if he starts to sound junky. He does a pretty good job of getting some good coughs out, and if that's not enough, then we go up for another quick treatment. This is also Parker's time to watch TV during the day, or his favorite movie. This morning, we finished Tangled that we've been working on for 2 days. I think he just has a thing for Repunzle ;)
During the initial ramping process, Parker gets a DuoNeb treatment (albuterol/atrovent). This opens the airways (albuterol) and breaks up the mucus (atrovent) to allow the high pressure to work efficiently! After his vest treatment, he gets his long acting brochodialator (Advair 230/21) to keep him open and clear, along with a cocktail of other medication for the day or night. This happens twice a day at minimum. And this allows him to be able to run and jump and play like a normal kiddo for the rest of the day :)
He is definitely coping very well with all this medical crappola he has to go through, and hopefully someday we can back off some of the medication and treatments necessary as we get closer to finding out what's caused this and continue to fight for a cure for PCD. The only known cure right now is a lung transplant, and this only happens in the most severe cases. I hope and pray Parker is not included in this category, but we take it as it comes. Until then, the Vest is a permanent fixture on our routine :)