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Hjlee

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Aug 4, 2017
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13
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Loved one DX
Diagnosis
08/2017
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Hi , my name is Jennifer and my mom is diagnosed as ALS last year(8/2017). Recently, her pulmonary doctor recommended my mom for the trach due to using 24 hours of trilogy. i am also researching about it but couldnt find the answer or opinion that that my mom has after she gets trach
(Note: She still can move her fingers for the power wheelchair, able to speak a little bit, and able to eat solid food but sometimes its hard)
below are some questions that my mom has.
1. how to do bowel movement? is this time where she needs to use diaper? (for now, we lift our mom and maker her seat on commode for bowel movement. since we cannot lift her after trach surgery, my mom is wondering how to do it)

2.She is still able to eat some food through her mouth but the doctor recommended to have feeding tube along with trach surgery. Can she still able to drink/eat through her mouth after trach surgery? if not, can she drink water when she gets thirsty?)

3. how can she take medication (such as riluzole, zolpidem) after trach surgery?

Thank you for your time and will wait for your replies.

Best Regards,
Jennifer
 

lgelb

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Moderator
Joined
Nov 5, 2009
Messages
7,252
Reason
Lost a loved one
Diagnosis
09/2009
Country
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State
WA
Hi Jennifer,

One of our members, Diane H, has a great site talking about these issues. She has a trach but still transfers to use the commode; her husband uses a Hoyer lift to do so.

I am not sure of her eating/drinking status, but other people with a trach certainly eat and drink to the extent that their weakened muscles allow them to do so safely. Ultimately, water may need to be in the form of a much thicker shake for your mom to have a hope of swallowing it, and at some point she will likely lose her ability to swallow.

As far as taking medications, usually it's safest to use liquids in the feeding tube, or dissolve pills in warm water that are safe to use this way. When a pill cannot be crushed, there is usually a similar one the same family that can be, or a shorter-acting version of the same pill may be available. Riluzole can be crushed and so can zolpidem. There is a liquid version of riluzole launching soon, and zolpidem also has a sublingual "fast melt" tablet form.

What we have found here is that a trach is a serious decision that you, your mom and any other family and friends who help care for her should talk about together, while getting all the information you can, watching videos, talking to other people who have one, seeing one in person if you can. For some people here, it has been a good decision. For others, it has not.

Best,
Laurie
 
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Narrowminded

Very helpful member
Joined
Apr 30, 2016
Messages
2,312
Reason
Lost a loved one
Diagnosis
07/2007
Country
US
State
PA
Hi Jennifer,

My husband Brian, was trached and vented 8 years ago. We did do a feeding tube at the same time. We wanted to avoid the need for a second surg/procedure. They did them at the same time in the OR.

For the first several years of Brian’s trach, he continued to eat, take meds etc. He did, however need his liquids to be thickened to avoid choking. He also had the cuff down and could talk around the trach.

He would get up on the commode chair to do his thing, take rides in his wheelchair around the neighborhood. Go to special events, concerts etc. Those things only ended as his ablities did.

I think one of the biggest concerns and issues is having enough help. If she is put on ventilator settings vs. bipap, someone will need to be within ear shot at all times. Depending on where you live and what you can afford, nursing can be hard to come by. It is also expensive. Medicare does not cover it. Here where I live only vent trained LPN’s and RN’s are permitted if you work through an agency.

If you hire someone on your own, and they are trainable and trustworthy, you do not need a nurse. I am not a nurse, although in technically I am, as I train anyone who comes to work with Brian. It can be very emotionally draining to do it day in and day out. Everything you do gets planned around when you have someone to stay with your PALS.

If you have anyone near you who is vented, I recommend visiting them to see what it’s actually all about.

Brian now is bed bound and has been for about 3 years. His mind is solid as a rock for the most part, but other than his eyes and an occasional smile, he has no movement.

I hope that helps,
 

Hjlee

Member
Joined
Aug 4, 2017
Messages
13
Reason
Loved one DX
Diagnosis
08/2017
Country
US
State
Ca
Laurie and Sue,
Thank you so much for the information. As for the care givers, thank to our big family (lives 5min away from our home), we do not worry about being there for my mom 24/7. Hospital will provide us training which all of our family will be attend to learn about it. I've researching and read peoples experience with trach/vent and told everything to my mom. I also emailed Diane H with same questions that i asked here to hear her opinion and got response today. Since my mom still can talk a lil bit, we also discussed when she wants to go sleep forever (this was the most hard part to discuss about). She said she wants to go sleep forever when it is hard to open her eyes to look at us. Thanks to my mom, she is very positive thinking person. Even though i explained negative result of surgery and people's opinion she is willing to have trach/vent.

I really appreciate your opinion and experience it really helped. Thank you once again.
Best Regards, Jennifer
 
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