Speak on a vent?

November 28, 2007 at 11:42 pm

I had MF/GBS in 5/99. I spent 3 weeks on a vent in ICU, 4 more mos. in hospital. I had 3 iterations IVIG, which did not work for me, followed by 5 iterations PP, which finally stopped the progression of damage. I had pneumonia 3x altogether; and multiple other life-threatening side-effects.
To the very best of my knowledge, as others have already stated, speech, even a whisper, is not possible until a trach has been installed. Your mom can then be weaned off the vent, even for short periods of time (like 1/2 hr), the trach can be capped, and she can speak. It is not an easy thing to do. Her lungs tend to fill with mucus, that’s why they suction her repeatedly, and when the trach is capped and air again passes over the vocal chords, producing speech, the mucus tends to get in the way and cause coughing and choking. Prepare her for this before you just let it happen!
From my viewpoint, you’d be better off right now not to try to rush the speech thing. I know she wants to tell you things, and from my own experience, she probably thinks you should be able to read her lips. She doesn’t realize that her mouth probably doesn’t work like it used to and that her lip movements aren’t flexible enough to produce readable characters. Try to explain all this to her GENTLY, and then ask her to stop trying to talk and just respond to your questions by squeezing your hand, weak as it may be, rolling her eyes, or whatever she is capable of. Assure her that just as soon as it is humanly possible, you’ll make sure she is given the chance to speak. Then come up with all kinds of yes/no questions, being inventive and resourceful.
As for her treatment, unless you insist on the best the staff can do, she won’t get it. Be there, or have another family member(s) take turns with you so that she is seldom alone. If the staff see that they are being watched and reported on it sometimes makes them more industrious; that goes for doctors as well as nursing and therapist staff.
Reaffirm your belief in an all-knowing and loving God who promises to “never leave you (her) nor forsake you.” Also, tell her that when you can’t see His Hand, Trust His Heart!
Our thoughts and prayers are with you.