Hi I really need some advice..My son is 30 yrs old.. He has had aspiration pneumonia since august. He has had 10 bronchoscopies. He also had a sleep study and has sleep apnea
.He uses an Ivent 101 with a mask at night and with a sip and puff during the day. The question I have is should we trach him????? Not sure what to do for him...
Alice - can you email me? i don't have your email address.
regarding the issue of whether to trach, sadly i think that many parents/providers/patients may feel that the choice to perform a tracheostomy might be seen as a sign of failure. While non-invasive ventilation may be the favorable choice for younger men and boys, men with Duchenne are now living to a much older age - an age at which non-invasive ventilation may not be the optimal option. I've had some adult tell me that they chose a trach because they just "got tired of thinking and worrying about breathing." I've had some tell me that the work of breathing just began to require too much energy and that they were having difficulty keeping their weight up due to the immense work of breathing. Certainly, the decision to trach is a personal and a complex one. It should, in absolutely no way, be seen as a failure, but as a viable option for the maintenance of breathing that may be the best possible choice, at some point for some people.
The Pathfinders, a group of young adult and adult men living with Duchenne, have put together a community resource on adult pulmonary issues - it can be viewed and downloaded on their website,www.dmdpathfinders.org.uk. Also, the last webinar from PPMD, Adult Duchenne Pulmonary Care and Management, should be up on the PPMD website very soon. Please take a look at both of these things and let me know if you have any further questions.
try contacting Dr. John Bach he is a non-invasive ventilation specialist
I think he will consult over phone or e-mail