Feeding Tube

[brooksea]

Annette!

What an insensitive b#@b! This lady needs to find a new career path! It is just amazing the things PALS and CALS have to be subjected to! Did she not think about how her words might affect you? I think I would have bludgeoned her! :twisted: Or perhaps told her "Hope you're not in a car accident on the way home deary. Would hate to see you paralyzed and trached!" Sorry, I just get so fed up with people sometimes!

Hang in there girl!

 

[CindyM]

What amazes me is the ease with which people make up their minds about something they know nothing about. I guess they just do not want to be confused with the real facts, once they have made up their mind!

 

[leegardens]

Hi Y'all,

Dr. Glass at Emory asked me on May 30 if we had thought about the ventilator for my husband . His last breathing test was on May 30 and he was down to 39% with a NIF of 40. We talked about it and my husband does not want the ventilator. We see the speech pathologist on Tuesday and after reading the threads on feeding tubes I am concerned about what to do.

Even though Jay will not take the ventilator, how will he do with a feeding tube? He has had four choking incidents and he is now using Thicken It. I had him drink some hot water when he was choking and the hot water helped loosen up his throat so could relax and get over the choking. My PALS is losing weight quickly even though he is still eating well. He gets out of breath easily and is exhausted all the time. I can see the atrophy in his arms and legs; he is getting so thin his pants fall off while he is trying to get his belt on.

I don't want him to starve to death. He is going downhill quickly and I do not believe he will have a long time with me. He is losing the ability to speak and I need some advice before our Tuesday appointment.

By the way Walgreens carries two different type of thickeners. CVS and Eckerds do not carry it without a special order but Walgreens stocks it regularly, Yea Walgreens.

We went to the ALS support meeting in Norcross on Thursday. Jay did not want to go but was happy he went afterwards. I found it really helpful because we were with folks going through the same thing and could talk openly about our problems. We got some good advice and also some ideas on things to look for to help prevent potential problems.

Jay and I have picked our motto: We can't beat ALS but we can fight it.

Thanks, Lee

 

[CindyM]

can't beat ALS but we can fight it.

Great motto! Thanks for the update, Lee. You have a couple of big decisions ahead. I wish you both well but I know you'll decide whatever is the best for your situation. Cordially, Cindy

 

[fiddleplayer51]

Lee,
I think a feeding tube is a godsend. It takes away all the distress of eating: choking, fatigue, etc. Hopefully your PALS would tolerate the install okay.
My PALS husband posted a few days ago in the People With ALS - "PALS" forum on his experience of getting his PEG this past Friday the 13th! His thread is "Warning about PEG tube install". He's doing fine now and it's such a relief that he has it as swallowing is getting harder and quantity per meal is getting less.
Good luck making your decisions.
Jane

 

[brooksea]

Hey Lee!

Your husband needs nutrition and the PEG is the way to go.

It may be tough for a couple of days after the procedure, but if he has pain meds it may be fine.

The ALSA should be there to help you with the augmentative speech device your husband could use. If not, I'm sure Nicole or the speech therapist will schedule an appointment for you at your convenience and the guy will come to your house maybe (I don't know - think his name is Steve).

Wish you LUCK Lee! Emory - they are great! We go Friday! And speech device is what we hope to discuss. I gave them a heads-up that we needed to talk about that and BiPap probs.