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.

Kids and Exercise

It truly is amazing at the amount of energy that kids have. Since the beginning of the summer my wife has been on a health kick trying to workout and keep in shape. Kyler and Branson our children with CF both have been given incentives to try and run every night with their mom. The concept is this:

We have a course that they run in which 6 laps is roughly a mile. We let them run for 15 minutes and based on the number of laps they get some money.

If the boys get 6 laps they get $1.00
If the boys get 7 laps they get $1.50
If they get 8 laps they get $2.00
If they get 9 laps they get $3.00
If they get 10 laps they get $5.00

This is not really a whole lot of money but after a week of doing this (they do it 3-5 time a week) the money really starts to add up. They get to spend the money on stuff to do this summer like video games, vacation, additional clothes, additional shoes really just about anything they want.

The absolutely amazing thing is that lately after they run they beg to go out and ride their bikes. So now when we go running we also bring their bikes along and they will ride for an additional 45 minutes or so. (Little to they know that this is also exercise)...

Since running we have really started to notice a difference in the quality of their breathing and how much easier it is for them to do exercise. I remember about a year ago when Carolyn used to take them for walk over 20-30 minutes they used to get winded just walking, now they will run and play all afternoon and then go and do the run and it does not even phase them.

We have heard in plenty of places how much exercise really helps CF patients with increased heart and lung function. We hope that this pays off. On average both boys run roughly 1.5 miles in the 15 minutes which I think is pretty good. I will most days offer incentives or adders for hard work. If they get 10 laps I'll give in a little kicker. I will try to post some pictures of their running soon.

Well off for now. I've got another meeting to attend. This should be a fairly slow Friday due to a company party this afternoon at 1pm.

My Children

I have three children ages 9, 6 and 17 months. Here is a little about each one of them.


Kyler (Age 9). Kyler is my oldest child and he is a loving and caring child (when he is not trying to antagonize his little brother). He has a will power when he sets his mind to something that amazes everyone. He is persistent and has a quality about detail that I admire. He was diagnosed with Cystic Fibrosis when he was just a couple of weeks old though we suspected that he had it at three days old. He had a bowel obstruction at birth which is a indicator that he may have the disease. Kyler to date has mostly had intestinal issue with his CF and is very healthy. We used to call Kyler Pookey Bear when he was younger, while we no longer call him this he is still our little Pookey Bear.

Branson (Age 6). Branson is a very loving and cuddly child and has an aptitude for learning and is very competitive (Especially with his brother). Branson also has Cystic Fibrosis. He was diagnosed at a very young age (several weeks) due to his older brother. Where Kyler has more of the gut issues Branson has more lung complications. We try very hard to get him the best care we can to insure he is happy and healthy. Branson enjoys riding his bike as he just learned how to ride without training wheels. A couple of days ago he asked me to remove his training wheels because he wanted to lean so I took them off and he got on and started riding without any parental assistance. He can be very independent but also likes to be reassured of his accomplishments from others. Branson's nick name has always been little buddy, not sure when we started calling him this but he looks like he could be everyone's best buddy.

Jade (Age 17 Months). Jade our youngest is the cutest little girl I've ever seen. Now, I know you are saying that I am biased. Well I am but I still think it is true. She has a spark about her that is contagious. The twinkle in her eyes is so much fun to watch. She loves to explore and seems to pick stuff so fast. Possibly the constant attention she gets from her brothers and parents. At this time she calls everyone "Ma Ma", in fact it is almost like she loves to have people say "What" when she says it. It is funny when she does that to complete strangers. They say, oh no, I'm not your "Ma Ma" and then the proceeds to laugh and say it again. Pretty funny. She also likes to be the center of attention, just like her mother. We call Jade our little Twinkle Star 'cause that's what she is.

We have the best kids in the world. I don't know what I would do without them. They teach me just as much as I teach them. It is real fun to watch them explore and learn. I love them more than words can express.

So enough sappiness... Back to blogging.