Breathing Treatments

For Cystic Fibrosis many techniques have been used to clear out the airways and lungs. One of the most effective methods to date has been CPT (Chest Physical Therapy). Patients used to have to have someone cup their hands and be repetitively "hit" or pounded by the cupped hand on the chest, back and sides. When we first started doing CPT, we used this method for both of our boys. They absolutely hated it. Specifically on the sides and where they specifically needed it. Not to mention the amount of time it took and how sore Carolyn and my hands and arms would get. After doing this method for about a year we finally talked our insurance company into getting one Hill-Rom Vest.

We were in heavin. This was such a great device. We started religiously doing two breathing treatments a day for 30 minutes. The only issue we had was that we just had one vest so we spent 2 hours a day on treatments. Still not a huge deal as Branson was not in school yet and the morning ritual was not that tough.

After learning that one of the initial ideas behind the vest was from a Dr. Warwick in the Minnesota clinic in Minneapolis. So we made the trip from Texas to Minneapolis. The trip was so worth it. He gave us some good ideas on individual treatment (more about this in future posts) and also suggested that we attempt to do our breathing treatments in a different manor. He stated that he had this theory that to loosen up all of the mucus in the lungs it made more sense to switch the frequency of the vest every couple of minutes and also have the boys cough between frequency switches. He gave us a complete schedule by which we should do the changes. He also stated that he is working with a new vest company to develop a "program" for the vest which will automatically vary the frequencies at time spaced intervals. We went home and were excited to try the new treatment. It really seamed to make a difference. We could tell that their coughing in the morning was way more productive and actually made them sputum free in the afternoons. We really liked this.

Our next thought was now... If we could only get the new vest he was working on. We got not one but two of the first versions of the RespirTech vest. (We had switched insurance companies) This worked even better. We absolutely loved our new vests. It automatically adjusts the frequency. We currently use the vests at 100% pressure and the boys tolerate it great. We also do two treatments a day unless we are doing tune-ups or unless they are ill with a cold or Flu then we will typically do 3 or 4 treatments daily.

The only issue with this vest is that the basic Quick Start program does not automatically pause the vest for the boys to cough but my wife and I are often going to the machine pausing the program and asking the boys to cough. It is amazing how easy the training on this is for them. When we stop the vest they automatically know that it's time to cough. RespirTech has been real receptive for feedback and we requested that they place a method by which the machine would automatically pause for 10 to 60 seconds so that the boys can cough. They stated that on future revisions of the product they will look at adding it in. We had such good luck with this vest that the doctors at our clinic actually started talking to the RespirTech representatives to get the vests for the clinic to use in the hospital.

One other things that we do while doing the vest is the nebs. We currently do Albuterol and Mucomyst mixed together and Hypertonic Saline solution. We find that for our boys the masks work better than the mouth pieces that so many people use. I find that it is easier for the kids to "cheat" with the mouth piece, not that they mean to, but they just suck on it and don't fully breath through it. The masks that we like to use are special order but the pari neb fits right into the mask, no special tubing is needed to connect the mask to the neb.

One thing that we have been talking about lately is the noise that all of this creates while doing the treatments. The boys typically watch TV while doing the treatments and with the vests on at 100% and the compressors working (two sets of each) it can get very noisy. They typically turn up the TV to almost max volume which adds even more noise. The problem is specifically bad when the treatment is over and the TV is blaring at max volume. The TV can actually hurt your ears. We have tried some other things to make the setup a little quieter like using a larger single compressor for the nebs but this proved to bulky to carry around and not as effective as the single nebs that they use. Carolyn had the brilliant idea to get some wireless headphones for them to use while doing the treatments. I have not had a chance to purchase the equipment but I think that this will work out great. I'll post when we get the system and give a review.

One other best practice thing that Carolyn thought of was to get a horse tack cart to place the vest machines and the nebs in along with all of the power cords and the actual vests and tubes. This works out great. After treatments we simply put the tubes all into the cart along with the wires and wheel it into a closet. Makes it real easy to keep the place clean. We even have Kyler trained to put it up and take it out. No one like to see this stuff sitting out all of the time specifically with two of them. The cart is fairly small and has a wheel system similar to a wheel barrow where you lean the cart and push or pull to move it. It is very sturdy and made out of light metal wide mesh. It actually looks quite nice.