Hi Kelly, I am sorry your uncle is battling so hard to fight infection...more than likely that is why the docs are hesitant to get him off the vent just yet or do a trach. I agree with luke about most folks not needing a trach to wean, only those who are hard to wean or have been on the vent a long time. It is uncomforatable at first, especially to turn your head but I would think being awake with an ET is harder (although I have never experienced being awake with an ET tube, I was switched to a trach and allowed to wake up)...at least it would be for me as I have a very strong gag reflex and hate tubes in general (just ask my gastro when he did an upper endoscopy!) It did get better though, as far as discomfort goes and I learned how to do all of my trach care. Right now, I don't even notice it...absolutely no discomfort except if I have a really bad infection and I am coughing alot.
I do remember waking up for the first time, it was a strange sensation having a machine breathe for me, it wasn't tough to breathe as the machine was doing all of the work but it was still on the scary side to get used to it. I remember putting my hand up to my trach and touching it and realized that I had been trached. I was unable to speak at first, they inflated the cuff, or balloon in the trach so that there would be minimal to no leakage. Being unable to speak was very frustrating, I was either writing what I wanted to say or signing. I was still pretty fragile. After about 3 weeks with the trach, they deflated the cuff some and asked me to speak. They also adjusted my vent settings so that it wouldn't alarm constantly, I still do the same thing at home. I do have what they call a Passy Muir valve, I didn't like it too much but alot of folks like it, especially those off the vent. It basically diverts the airflow back up through your vocal cords and allows you to talk. (If your uncle does wind up with a trach and uses this device, they will teach him as well as the family on how to properly use it as well as cleaning it) I do just fine with what the docs call "minimal air leak" technique, I just drop some of the air in my cuff and talk just fine. I talk so well that people on the phone don't really have a clue that I am trached and on a vent. One thing to remember, a trach doesn't have to be permanent...alot of people that have been trached while under my care as a nurse (to help them wean) get it removed unless there is damage to the windpipe. I hope your uncle fights that infection and gets off the vent soon! And please keep us updated, I am pulling for the guy.
As for your question aboutI whether I will ever come off the vent, the answer is no...my disease is progressive. It is a very rare type of muscular dystrophy that also affects the diaphragm. Occassionaly, the docs will take me off the vent and ask me to breathe on my own for a bit to see what my tidal volume is. It is pretty pathetic usually runs in the 200's (mls), they like to see at least 500 or better and I never do that even sitting straight up or standing. I have tested that myself with my own vent with some adjustments that basically allows me to do all the work and it is always the same, sometimes less if I am tired. My pulmo monitors me carefully as far as the vent goes. My portable vent is pretty small, a LTV 950 and allows me to do different settings for the day and night as well. During the day, I do some of the work as far as breathing goes, at night it switches over to just the machine doing the work. It took awhile to tweak the settings to where I am comfortable with them. The nice thing is, I no longer have to fight to breathe anymore...it took everything in me just to breathe prior to the vent, even with the help of the BiPAP and O2 bleed in. Interestingly, my CF wasnt diagnosed until about 6 months ago.
Well my friend, enough about me...if you have any questions, please don't hesitate to ask. I really don't mind at all. Hugs and prayers going to your whole family, Jenn <img src="i/expressions/rose.gif" border="0">