Both of my sons lung function has decreased, and the younger of the two (14) had pneumonia last fall. The pulmonologist is adament about having the boys trach'd soon. The boys, while not ready to call it quits, are resisting the immediacy of the surgery.
I could use anyone's advice on how the surgery went for you if your child opted for it, or other alternatives you used to prolong not getting the surgery.
We use bipaps at night, and have a cough assist.

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My son sees a Dr. John Bach in New Jersey. He has a web site that you should check out. He is with the MDA and feels there are others ways to treat decreased lung function besides the trach.

Michelle
I would strongly suggest that you consider non-invasive day time ventilation via a sip and puff system, not a trach. Pretty much all of the young men in the Pacific Northwest use this set up with very positive results. I would be happy to discuss this option with you in more detail if you would like. Our son's Pulmonlolgist and Respiratory Therapist (University of Washington) are huge proponents of this type of intervention vs. a trach. I think they would be happy to assist you in working with your local Pulmonary doc. Another resource would be the Respiratory care concensus document for treating young men with DMD. The trend is definitely awayfrom trach's and using non-invasive ventilation. Dr. Finder is another resource for you his update on Pulmonary care can be found on the web and is referenced on the PPMD News box on this very screen to the far right, see Dr. Johnathan Finder article in little red box that says PPMD News. My contact information is KMrey15@aol.com, or you can send me a message on this community site. Please let me know how I can help. I can send you pictures of what the set up looks like if that would be helpful as well. I really, really would encourage you to do some more research before going the trach route...
katherine
Are you using a bipap at night with an AVAP setting or a setting less than that? I have several friends who use the puff system of ventilation. They love it and it is far less restrictive than a trach and with no danger of infection..There is a demo on YouTube

http://www.youtube.com/watch?v=5TL5NoNXkow&feature=related
Ginny Ward said:
Are you using a bipap at night with an AVAP setting or a setting less than that? I have several friends who use the puff system of ventilation. They love it and it is far less restrictive than a trach and with no danger of infection..There is a demo on YouTube

http://www.youtube.com/watch?v=5TL5NoNXkow&feature=related
My sons are Aaron 19 and Andrew 23, neither is trached, neither have had pneumonia, both use bi-paps, my 19 year old went into respiratory distress last year in June 2008, we had two options, go to hospital with the possibility of being trached or Hospice/Home Health, we choose hospice because at first we did not really know what was going to happen to Aaron, he went from using the bipap only at night to 24/7 in a day, he had been getting more tired and had a cold a few weeks before that and I think it just caught up with him, he is not on hospice care anymore, but we have home health come in every week and they provide pallative care and he is doing good, he uses a avap 24/7 with oxygen, my son did not want to be in the hospital or be trached, I tried working with the pulmonologist we had and get him on a LTV, but it has not worked out, my sons and I have decided to try another pulmonologist that a few DMD patients have been going to and some use the LTV non-invasively, and I am hopeful it will work out this time. You will know what is right when making such a tough decision. Good Luck.
Hey there, please search Dr. Jonathan Finder on this website and seek his guidance. He is truly wonderful. Dr. Finder knows people in different parts of the state and can also put you in touch. Let us know how it goes. Take care my friend.
Patty you always have good information too

Patty Sherman said:
Definitely contact Dr. Finder. He has had very good luck with non-invasive forms of ventilation. He spoke at the conference.
jonathan.finder@chp.edu
Also refer to the American Thoracic Society guidelines for DMD care: http://www.thoracic.org/sections/publications/statements/pages/resp...
This document is somewhere on the PPMD site as well in PDF...
Here's Dr. Bach's website:
http://www.doctorbach.com/
Even better, ask your sons' pulmonologist (politely) to get in touch with one of these doctors :-).
Thanks to all for the great information. The sip and puff youtube video was great. What about CO2 levels? That seems to be one of the major concerns of the pulmonologist. Does the sip and puff system take care of clearing the lungs enough of the CO2?
Ed
Yes, it does take care of the CO2 issue.
katherine

Mortman said:
Thanks to all for the great information. The sip and puff youtube video was great. What about CO2 levels? That seems to be one of the major concerns of the pulmonologist. Does the sip and puff system take care of clearing the lungs enough of the CO2?
Ed
My son has used the "sip vent" as seen in the NIV video for 8 years. (he is 28 now) Because of this system he has been able to get a BS degree and is working full-time. I hope you got your boys to New Jersey to see Dr. Bach. Please update us on this situation!!
My son, Tim is 20 y/o and is not on the trach. He loves the bipap and uses it quite often, mostly when he is sleeping. He prefers not the trach and we had been advised that the bipap would far more better than the trach. I think alot of parents here gave you alot of good advise and suggestions. Perhaps you can go this route first and see how well it works before jumping into somethng that will be alot more work. Just a thought! :)
We are not at that point yet, but all the information here is wonderful. I have saved and bookmarked it all for future reference.

Susan

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