Starting tube feedings

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Amanda81

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Joined
Nov 1, 2012
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57
Reason
Loved one DX
Diagnosis
12/2012
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US
State
IL
City
Central IL
I need help from all you experienced folks out there (PALS and CALS)... My mom needs to start tube feedings, but the first time we tried it made her stomach hurt. What is the best way to introduce the feedings to her system to prevent this? How much do you start giving and at what time intervals? What other advice can you give to make this transition a good experience? Thank you in advance!
 
I don't care to repost my lengthy post about peg feedings, but it is posted in this forum under.........." drowsy"

When I started the wife's feeding peg, she was still able to eat foods orally also.
Thus , it was more gradual.
I don't know if that is an option ( gradual) for your mother.
 
Not an option at this point. She refused to do the feedings after the first bad experience, but when she choked really bad last night she decided nothing more by mouth. Thank you for guiding me to your post, I will go take a look.
 
Are you gravity feeding, pump, or bolus?

The method with the least amount of irritation, for me, is the pump. If you don't have a pump then gravity is the next best method.
I have gravity feed bags but using an open syringe or a similar device will work too. I read one persons post on FB where they used plastic condiment bottles with the bottoms cut out. Just make sure you control the volume by how high the device is above the tube inlet.

If I hold mine as far up as possible, it flows pretty fast, lower it a bit and it slows down.

There are groups on Face B that cover this stuff in much more detail than what I have found on here.

Private message me if you'd like a link to the page.

Good luck!
 
I only use force for the luke warm water rinse.( and then only for the first syringe full )

The feedings I just pour into the syringe and let it slowly flow downward.

Works for us.

Every one is different.
 
If her stomach pain was immediate and strong, her tube is not in her stomach. This is a very serious problem and requires immediate medical care.

Whew. Having covered the worst possible scenario, I'll move on to the more likely...
Your moms trust in tube feeding has been clobbered by a bad first experience so going slowly is important in getting her used to feedings. After checking the tube placement (go to ALS: From Both Sides for info on how if you aren't sure), begin with small feedings of about 2 ounces (60 cc's). That should be enough to see if her discomfort is due to the feeding method or if she is not tolerating the brand of formula. Make sure the feeding is a bit warmer than room temperature by adding a little hot water. Don't overdo the amount of water used in flushing -- 60 cc's should be plenty. You can skip any pre-feeding flushing. The water should be lukewarm too. Let the feeding and the flush flow in by gravity by using a 60 cc syringe as a funnel. If this causes stomach discomfort try blenderized food she is used to. Blenderize the heck out of it and add water to it to keep from clogging the tube. Don't worry about nutritional content right now, just give her something she liked to eat.

If she tolerates either the formula or food this way, begin with every 2 hour feedings of the same. If that goes okay for the day she shouldn't need overnight feedings unless she wakes up hungry. Tomorrow try increasing the amount of feeding and stretching the time between. Some people can tolerate a whole can of formula (240 cc's) at once, but half that is probably more comfortable for most of us. Give that amount a little more slowly by holding the syringe low by her stomach while gravity feeding.

Once she is doing ok with the feedings you can sort out the questions of formula brand (fiber added brands are essential), nutrition, total daily amounts needed, frequency, and making the process easier.
 
I wouldn't advise cutting back on water because water is VERY IMPORTANT in keeping hydrated and VERY IMPORTANT for bowel movements.

My RN Hospice nurse keeps stressing that to me.
 
The Hospice nurse is absolutely right about getting enough water! But for the purpose of getting started on tube feedings after a rocky start, smaller total volume may help. You are quite right though, so some extra water between feedings would be good. Hopefully after a day or two she will be tolerating the feedings and the details of how much water and when can be worked out.
 
Diane,

You have had ALS 27 years?
 
Yes, depending on where you start counting. Muscle cramps and fasiculations starting about 1980, leg weakness developing in the early 80's, diagnosis of ”Motor Neuron Disease, possible ALS" in 85. Continued slow progression and three consults with neuromuscular/ALS specialists and more tests with arrival at the ALS diagnosis by the early 90's. Scooter in 89, retired 95, BiPAP 95, power chair 2000, trach and vent and PEG 2004 but still eating and talking today. Currently have only a little use of fingers of left hand. Head requires support but I am up in my power chair all day every day. Working on getting something other than a joystick for driving.Still progressing at a snail's pace!
 
Wow Diane. I thought it was a typo!

You've given me hope - despite your circumstances.
Thanks for that!

I'm sure you will have plenty of advice and tips for all of us given your extensive experience. Welcome to the forum, and dare I ask - what took you so long to find us? But glad you did.
 
jellis - We are doing gravity feeding with an open syringe. She passed her swallow study in July when the tube was placed and so her insurance (Medicare and BCBS) isn't covering any supplies. The pump would be great because right now I am going to her house every 2-3 hours to do a feeding (she is too weak to do on her own). I have had to take FMLA from work, soon to be unpaid because I am running out of paid hours. And I can't find anyone reasonably priced to hire. I refuse to pay a nurse to do a job that they send family members home doing (no offense to nurses, I work in an ER and have the utmost respect, but gravity bolus feedings are simple enough for almost anyone to administer). As for the swallow study in July... what a bunch of crap! Just because she passes one study means she can eat on her own? How about the thousand other times she chokes? What about her weakness? What about her energy? This whole situation is more frustrating than I can even begin to express. :-/ Sorry for my rant... I will probably be messaging you for the FB link. Thanks!

Diane H - We started the next day with smaller feedings every 2-3 hours. It went much better than the day before. We will keep working up the amount like you said.

Thank you everyone!
 
Amanda, possibly contact your local ALSA or MDA to see if they have a pump to loan you.

Yeah, sounds like her insurance is giving her the run around. Get her neurologist to send a letter to her insurance explaining the medical need for supplies!. It's worked for me a couple of times on issues unrelated to ALS.

Message me if you need any help...I've written a few letters myself.
 
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