[Being able to hug or hold them was always tough because I always missed that. Like you said, tossing them into the air and catching them is something a Dad should be able to to do but since I never could I'm thankful that there was always someone around who could and did. We have to learn to accept the physical things that are impossible for us to do.

Deb and the kids can read my lips extremely well so communicating with them isn't really a problem. If I'm away from home my laptop with E Z Keys is velcroed to the computer tray on my power chair so if I'm near an electrical outlet I can use my computer to communicate. If not, Deb or the kids translate.

If you're with your son through all his school and sports activities from the very beginning all his friends, classmates and their parents will be acquainted and comfortable with your situation. That's totally on you. It takes some guts to put yourself out there and risk some embarrassment but it's worth that personal risk for me. Like I said in an earlier post, the kids were like 3&4 or 4&5 when I became vent dependent so it took some courage to go to their first school activities for me and them. It paid off in the long run because by the time they were in Jr High and High School many of their friends had learned to read my lips and some were even brave enough to suction if Deb or the kids was busy with something else.

Oh I'm very seldom totally alone if I'm on the vent. Occasionally Deb will run a short errand to the bank or out to get milk /bread and leave me alone but not often. Sometimes I can talk into taking me off the vent so she can run errands. I feel 100% safer off the vent if I'm alone because I can breathe on my own for an hr or more with no problem. Deb's afraid I will collapse a lung if I'm off long. I'm more comfortable off the vent when alone because if I'm hooked up and the vent malfunctions I'd be dead in 15-20 minutes. I know this from experience but that's a whole other story. LoL

When Deb leaves for work I have someone with me. It makes me so angry when I hear people say it costs $250,000-$300,000 to care for a vent dependent PALS at home. You don't need an RN CNA or any professional help. You can train anyone to help. This isn't rocket science or brain surgery! Luckily we have found carers who will sit with me for $30/day three days a wk and my father-in-law helps the other two days. My carer only suctions me a few time a day when needed and does laundry. I don't need to go to the bathroom or anything during the day. Well, I use condom catheters so urine needs emptied from my leg bag a couple time daily.I don't need nursing even though I'm on the vent 24/7. One girl who worked for us a yr had a 2yo daughter she brought with her. They ate here, done their laundry here and only charged us $75 for five days a wk. We helped her and she helped us. The girl we have now is between jobs and would rather be here helping us than sitting home doing nothing.

Jeff, my life with ALS is an open book. I may still be alive because my purpose in life is to help other PALS who are struggling with things that I might've already overcome. Some people have told my family and I that we make living with ALS look easy. Well, it isn't easy but but I feel the good times by far out weigh the bad!

Jeff...I agree with Dave that is dangerous to be on the vent when no one is there...as Gary can breathe off the vent ...but if only part of the hose becomes unattached it would be like breathing through a garden hose..he'd only have minutes to live..
However, due to the risk of mucous plugs off the vent I never leave him alone.. not that the risk is higher but if I was gone I could hear no alarms or see any distress.. I'll walk out of the room but not the house...a collapsed lung is not an issue however from coming off the vent if one has their own respiratory drive...as collapsed lungs or pneumothoraxes ( partially collapsed lungs) are caused by too much positive pressure or blunt force trauma...atelectasis could be possible however if one stays off the vent too long...but we've had no problems with that as x-rays can detect it..atelectasis has not occured since he has been ventilated even with the time off of the vent .....
His doctors actually considered taking him off the vent to treat a pnuemothorax before putting a chest tiube in..as normal breathing is negative pressure as oppossed to the positive pressure that all ventilators are based on ...but said if he could not breathe for 24 hours ..it could not resolve on its own ..most PALS will never have to have a chest tube...it is only caused if too much positive pressure occurs...if it does occur a chest tube comes out in 3-5 days...
Lisa

Linda Lisa,
I thought you were limiting your computer time more carefully now? You're on as much as I am, or more! LoL

I don't breathe deep enough to fully expand my lung. Thus doc said it could collapse. I don't know all those big fancy words you use but what the dr said makes more sense to me.

Hi Dave..
I think your refering to atelecatsis...a collapsing of tiny air sacs in the lungs ...not a collapsing of a lung itself ...atelectasis and pneumothoraxes are treated oppossitely...atelecatsis is treated with ventilation of positive pressure and an increase of Peep..where as a pnuemothorax or a partially collapsed lung is often treated with the negative pressure of a person breathing on their own ( as all vents, c-paps and bipaps are positive pressure) and by reducing peep..for full time or almost full-time ventilated PALS a chest tube is the only way to resolve a pneumothorax..as they can not breathe long enough to resolve them on their own.....
Of all the problems Gary has had since venting ..although atelectasis was once feared by docs when coming off the vent due to his low tidal volumes .it is easily seen on x-ray and has never been found..so he is still encouraged by his docs based on his last vent bypass parameters and chest x-rays to continue coming off...
Most PALS who are told they can come off a vent safely are given weaning trials ..to see how long they can bypass a vent..their stats are monitored contunously in a hospital setting ...docs typically order chest x-rays to insure atelectasis does not occur..before a recommendation is made for coming off the vent at home....I wouldn't however encourage PALS to come off a vent if your doc does not recommend it...Lisa

Thanks Dave, Lisa & other members for your opinions and experiences regarding the vent. I hope members like myself will go into the vent no vent scenario with greater confidence.

Jeff