Anyone had tracheotomy?

[charleyjesi]

My fiance's grandmother has had ALS/PBP for about a year and a half and we've got her a feeding tube almost a year ago. Her phlegm has gotten worse, even when switching from formula to blended foods, and her doctor suggested having a tracheotomy. Just wondering if anyone has had it and if it helps?

 

[ottawa girl]

Check out JoelC - beloved member.

Getting a trache is a personal decision... What does grandma want?

Living and Surving with ALS

 

[Santa joe]

Like Elaine said - it's a personal decision. I will give you some advice. Tomorrow will be 1 year since my husband was trached and on a ventilator. It has been a year from Hell! His sister agreed to live with us and I would pay her. Everything went great until I noticed she was getting into his Lortab. We parted ways. I've been on this journey for 6 months by myself. I have a CNA that comes over 3 days a week for 2 hours each day. She is NOT allowed to touch the vent. Finding someone that is vent trained or willing to be vent trained has been very difficult. The price of agency provided LPN or RN can range from 36.50 a 50.00 an hour. What I'm trying to say is if the trache is what you decided on make sure you have plenty of support.......our on sons do not want anything to do with the trache, they are terrified. I suggest to anyone considering this to come and live with me for a week. Don't just visit someone on a ventilator. I wished we had.

 

[charleyjesi]

Check out JoelC - beloved member.

Getting a trache is a personal decision... What does grandma want?

Living and Surving with ALS

She wanted us to put the question up on an ALS forum to see what others say... So we can gather information of others who have had experience or been through it so she can make a decision.

 

[charleyjesi]

of course it is a personal decison. she also decided to ask on this forum so she can gather information and make a decision based on the experiences of others... thanks for the replies, it was helpful.