Hello everyone and we hope everyone had a safe and enjoyable 4th of July weekend. We stayed home and it was nice for me to have 3 days off from work. Nick’s coughing and vomiting episodes have continued even though the air quality has been a bit better here in the valley. He has so many secretions and is requiring suction almost on a daily basis. His spirit is good and we finally have him convinced that if he lets us know right away that he is coughing we can get it taken care of sooner without it getting “real bad” and he can be back in his chair in a shorter period of time than when he waits to tell us.

I’d like to take this opportunity to talk a little bit about the importance of getting and learning how to use a cough assist for those of you in the DMD world. We have had a cough assist for several years now and when we got it Nick hated the “vacuum cleaner”, as he called it. We would practice with it, though not as often as some do, and it sat on the shelf waiting. During the past few weeks the cough assist has saved us. It’s amazing how much “stuff” it pulls up and out. Nick can’t cough it out on his own but with this wonderful machines help he is able to get clear sooner and usually without his oxygen levels dropping dangerously low. If you don’t have one push to get one! Also push to get a suction machine and pulse oximeter and an ambu bag. These devices can be a lifesaver and will most defiantly help to keep you from having to run to the emergency room every time you have secretion issues! We ended up buying our own pulse ox and ambu bag but believe me the benefits were worth the cost. I cannot stress enough to you all how important these items are! As I write this Bob has called me and told me that Nick has had another episode already today. Bob said Nick had so many secretions he could barely speak and within a few minutes of using the cough assist Nick was clear and resting again. So PLEASE, please make sure you are prepared at home.

The other day I was working out in the flowerbeds in the front of our house and Nick was watching me. I was pulling weeds with a long tool I found that pulls weeds without having to bend over. Nick asked Bob what that tool was that I was using. Bob being Bob, told him it was a "nut buster". Nick thought about this for a minute and then said “Can't you ever give me a straight answer? No, you can't, because you have a hamster wheel in your brain". This caught Bob by surprise and he couldn't keep a straight face and burst out laughing. Nick says, "That was a good one, huh Dad?" Bob said, "Yes, that was a very good one."

Steffi is growing like crazy and still wants to crawl in bed with Nick. Last night I attempted it and if I would have had a free hand I would have taken a picture. Nick said he got squashed but he had a big smile on his face. I’ve uploaded a picture video to you tube if you want to see some cute pictures of her and her puppy friends. The link is http://www.youtube.com/watch?v=LPfzO-RTE-I

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Comment by Debbie Fish on July 28, 2008 at 11:57am
Hi Maxine,
We use a pressure of about 40 on Nick's machine. I've never adjusted it much and am not sure how high you can go. What I can tell you is that if Nick sounds gunky in this throat I don't do the inhale part of the cycle. I tell him to take a breath and cough, cough, cough as I do the exhale part of the cycle. I'm not sure if this the right way to do it but I'm worried that if there is something in his throat that by doing the inhale I'll push the secretions into his lungs.

As far as using the cough assist when he doesn't have a cough the answer is yes. They become more familiar with it and it well end up working better when they actually do need it. Our pulmonology doc recommended we practice with it 2-3 times per week - more if there was any hint of a cold or something coming on.

Nick has actually been doing a bit better the past week or so. We are now going 1 to 2 days without any cough. Hopefully it was a bad air issue and now that we again have sunny skies in the valley we will see a big improvement!

Take care.
Debbie
Comment by maxine Strydom on July 28, 2008 at 4:38am
Hi there, thanks so much for sharing, and i really do need this kind of help, my son is nearly 17 and we have been part of this community for the last 8 years. Jarryd has a cough machine, it is the only one in south africa and so we get very little help with its use, firstly, i would like to ask, should it be used on him with or without a cold and secondly, the last time he had a cold, they wanted to operate on him , which i wouldnt allow, so took the machine to hospital and they could not believe how well it worked and how he no longer needed a bronchoscapy, (dont know how to spell it,) my question is , even at the time, when i was in my panicked state, jarryd still seems to be able to cheat this machine, in other words, i push in the air and he still has that little cough, almost one from the throat and not from the chest, is it safe to just push up the pressures, and will this solve the problem, Please let me know what your pressures are on, thanks so much for your life saving letters, Kind regards Maxine
Comment by Misty VanderWeele on July 15, 2008 at 4:50pm
I agree with Debbie, these devices are awesome to have. We have had Luke's cough machine over a year and use it mostly during the winter months and his goal is to use it a couple of times a day even if he doesn't need to. Now he isn't on antibiotics all the time. Another thing that has helped Luke tremendously is he takes a probiotic to help with digesting which = less secretions. Your respiratory system is connected to your digestion. Meaning what you eat plays a huge roll in how your body functions. : )

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