Recovery after feeding tube?

This is my first post and I hope this is appropriate to this forum.

I'm wondering if anyone can give me a sense of what the recovery is like after a feeding tube is placed.

My MIL is having surgery on Monday next week. She's still very active and trying to maintain as much independence as possible. She was diagnosed in October 2013 with Bulpar ALS but is still able to speak clearly and is still able to swallow food without choking. She's had a few coughing incidents but nothing too scary.

My husband, son and I moved in with her in January to help with caregiving. So far caregiving has really been mostly normal stuff that goes on with families living together - joint dinners, helping with cleaning, running errands, getting groceries. She's still able to drive but needs help getting into and out of the car. She's still on a walker but is needing a wheel chair more and more if she is out for very long.

She is paying for a caregiver come in a 5 days a week to take her to the Y Center for yoga and swimming, run errands with her, take her to lunch with friends and any other activities that they can help with to keep her independent and not depending on me or my husband for help. When she is out and about, we are noticing that she comes home very tired and sleeps for hours afterwards.

She's lost 20% of her body weight since October and is hoping that she'll put on some weight with the feeding tube. Is this a realistic hope? She's also hoping that she can get back in the swimming pool and go to yoga once the incision is healed.

I'm wondering what to expect but am also posting because of my deep seated fear that by the time the feeding tube is healed, she'll be too weak to take up these activities again. She prides herself on her independence and has really struggled with needing our help. I am worried that this surgery, rather than increasing her independence will in fact mark another loss in this fight, leaving her increasingly dependent on others and angry about it.

Sorry you have to be here, but there is lots of support and info here ...

>but is still able to speak clearly and is still able to swallow food without choking.
>She's lost 20% of her body weight since October

Is she not eating? What do you think is causing the weight loss? I haven't been able to eat since Feb., but my weight is holding w/ smoothies, etc.


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Max - Wednesday, July 23, 2014 12:30:58 PM
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onset 9/2010, diagnosed with ALS by Stanley Appel 8/29/2013
It Is What It Is ...

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I had my tube placed in January. I was a little sore for a few days but nothing that restricted my activities. Just couldn't lay flat until the soreness was gone, slept propped up. Resumed my normal activities the day I came home, (overnight stay for me). I'd ask the doc about the swimming thing, not sure if it's advisable or not. Using the formula they prescribe after the tube is placed she should be able to gain at least some of her weight back if not all of it. Insurance should pay for the formula as it's treated like a drug and also the syringes or bags and pole needed to use. I use syringes myself. It can also be used for taking meds, just be sure to ask your pharmist if their crushable.

> hoping that she'll put on some weight with the feeding tube

fwiw, my morning meal is a 'smoothie' blended from a Boost protein drink, a scoop of whey protein (the two of which give ~66% of the daily protein recommendation), a half banana and about 2 Tbls of peanut butter. I also toss in some ALC and LS, but that's another topic.

Easy to swallow while possible.

This is a small boatload of calories and kept my weight fairly stable. I have limb onset and not bulbar.

[Though this does not address your primary question, it may give you some insight to another issue...]

My PALS has not made a decision in regards to a feeding tube, yet... though her current inclination is to not do one. Regardless, she lost a considerable amount of weight and was continuing to lose weight until our 2nd neuro (Johns Hopkins) immediately put her on a BiPAP at night. She had reduced lung capacity and was working so hard to breath at night that he likened it to running a marathon each night. He also said that she was likely experiencing a CO2 buildup because she also could not exhale appropriately. Once on the BiPAP, she began to sleep better, her weight leveled and she no long fell asleep during conversations or without notice during the day. Hope you find the right solutions for your husband's mom!

Jim

I wrote a response earlier but it seems to have gotten lost in lala land. Short answer is that I was able to resume normal activities the day after my tube was put in. Was a little sore so she may need a little assistance sitting up for a few days but that will pass. If she uses the formula that the doc will prescribe she should be able to gain some of her weight back or at the very least level off. The tube will also free her up from chocking worries. She can still eat my mouth when she chooses but using the tube will eliminate aspiration worries. Insurance will cover the cost of the formula and needed supplies same way they cover her meds.
I advise checking with her doc before going into the water. Not sure but I don't think that's advisable

Thank you for the replies.

In addition to ALS she has diverticulitis (sp?) and had a flare up in the Fall and lost weight then. However she's lost quite a bit of weight (I don't know how much for sure) since January. My husband feels that she's exercising too much and that her body isn't able to compensate for the calorie needs of ALS.

She drinks smoothies with Boost or added protein in them and will sit down and have meals with us. I think food has always been an after thought for her (eat to live) rather than a focal point as in my family (live to eat). She tends to prioritize activities (exercise, hobbies, gardening) over eating.

For this reason, I feel hopeful about the feeding tube because I think it will help her keep up calories to meet her metabolic needs and hopefully will not cause issues with the diverticulitis.

To respond to the question about O2 levels, I wondered about that too but the U of M said that her levels are still good. I know she's not sleeping well but think this might be because of having a busy mind, which haunts her at night.

On a different note, a hospital bed was delivered today so she'll be able to read more comfortably in bed. She was really disappointed that they don't have a good head board, which she's used to.

Again, thanks for the support.

>My husband feels that she's exercising too much

see: https://www.alsforums.com/forum/peo...-thought-ill-advised-use-should-i-go-bac.html

Swimming is possible once the PEG/PRG site is healed, about a month, and the stoma stable. The most important part is that it not be bumped too hard. Google the topic for tips.

Diverticulitis should not be an issue w/ the typical ALS diet; she should stay clear of any known triggers as always. I would make sure she is aware that too much exercise is harmful, but beyond that, her road is really hers to choose as long as she can. At some point, she will have to slow down but it does not sound like the tube itself will be the reason.

Welcome stranger!

Usually that first week can be painful, but you can start feeds through the peg usually within a day.

The calorie needs for PALS is very high. If she isn't too food oriented then the peg may be a good way to get lots of calories in and she can just continue to eat her favourite things as she wants.

You can swim, but as has been said, usually they say 4-6 weeks providing the stoma heals well.