I truly feel for your plight. Lady, you have been tested
thoroughly and been burdened with a great responsibility. Life isn't
fair. Having said that, I must agree with Dr. Holland and Ms. Hanna
that a tracheostomy and a ventilator would improve his condition and
allow him to thrive as he grows. He will be much more comfortable and
at ease, in my opinion. That is from my limited experience. After
being put on a vent I had much more energy and I gained weight. Perhaps
Austin will be helped as much as I. The surgical pain is minimal and
does not persist. You must weigh the issues of a passing discomfort
against the possible great improvement for the rest of Austin's life.
Go for it! Although I am a just layman and I have only been vent
dependent for four years, I have had enough time to mull over my
decision as I have lived against ALS for 22 long years. It should
maximize Austin's life experience. Since you are not intimidated by
life support equipment, and home vent care is easily manageable (on bad
days I tell my assisting nurses that I could train a monkey to care for
me <snicker>), I assume that someone such as yourself that has been
life's ringer, could easily handle the task -- with help, of course. If
you want to discuss the down and dirty nitty gritty of vent care, I am
only an e-mail call away.
Good luck and may God bless your efforts,
Lowell "Lowy" Craig Bostwick
FAX & data: 908-665-2612
INTERNET: 76120.3667(AT)CompuServe.com
or LowyB(AT)CompuServe.com
CompuServe ID: 76120,3667