Status
Not open for further replies.

lovelovelove

Active member
Joined
Feb 4, 2009
Messages
40
Reason
Loved one DX
Diagnosis
08/2008
Country
nl
State
zeeland
City
terneuzen
Hello everyone .
Mum is on feeding Tube for a week.
but the past week she got nutrition-water(i dont know the english words for this ) from the hospital.
the following week , we are going to feed her real food。

we are in china.
There is no care center in china for ALS.

I hv bought Stuff-mixer from Holland for her .

My question is :
is it ok if i use the mixer to maker porridge for her,just from everything we normal eat?

what do you guys feed ?

thank a lot

Linda
 
Hi, Linda ... as long as it will go down the tube, that should be fine.

I use liquid supplements that are available here in grocery stores, but I understand a lot of people do what you are planning to do ... use regular food blended with liquid to make it go down the tube.
 
Hi Linda, our nutritionist said it is very very important to clean the tube before and after a feeding of any food other than formula or liquid supplement. She told us to put 50ml of water through the tube and she stressed to us that we should do this before and after the feeding. She said it was important not to let the tube get blocked.

Hope this helps!
 
Hi Thelma, did your dad get his tube and if so how did it go and how's he doing?
BTW I like your avatar, its a very comforting image.

Barry
 
hi all... i didn't want to hijack this thread but i didn't want to create another one on a similar subject.

how do you know when your PAL is ready for a peg? my mum is complaining of a tightness in her throat and is very nauseous. she has been very stressed out today. she is very nervous by nature but she has been particularly bad these last couple days. everything she feels on her body convinces her she is worsening. she is not choking or coughing -- but complains that her throat feels it is closing up. does it sound like she may need a PEG soon?
 
Hi Barry,

My Dad just got his tube today and I must say the whole process was pretty flawless! We were so well informed every step of the way and my Dad was brave and smiled throughout except when he got out of the operating room and was pretty groggy and had an irritated throat. The nutritionist explained everything so well to us and I was very very proud of myself because I am such a baby when it comes to seeing even a droplet of blood but the nurse lifted my Dad's gown and proceeded to explain how to clean the wound and I really held it together even though on the inside I was screaming "HOLY S$#T DON'T PASS OUT DON'T PASS OUT!" I just nodded and smiled. My Mom was a bit queasy too. Overall it was seamless however there were a few moments when I had to fight back the tears just because I hate that my Dad is sick and that he has to go through any of this. ALS sure does suck.

The avatar comforts me too. Dads are amazing. They are our heroes.
 
Rocmg, I think that if your Mom starts losing weight or choking you will know it is time for a Peg. Also your neurologist will definitely keep you informed. It's a lot to absorb at first but I think the benefits are so worth it!
 
lovelovelove
I am not sure how to answer you as I am still trying to figure out the tube feeding options myself. In the US we have tube feedings that are sold in cans by the case. The cans are made to have the nutrition that a person needs every day. The cans are heavy and I imagine shipping would be expensive so I hope you can find some options closer to home. Some people use only the cans and some people use some cans and still eat some food both. My Dad is having difficulty with diarrhea so I am learning you can put regular food into the tube as long as you keep the tube from getting clogged or blocked. We have not tried this yet.

thelma313
Glad your Dad's procedure went well and that you held up like a trooper for the specifics on the care of the tube. My Dad said it stung the first day, sore for another day or 2 and but after that he was tucking the tube in the waist band of his pants and was comfortable with it.
Hope all continues to go well.
Dana
 
Dana, thank you for sharing your Dad's experience. Once the local anaesthesia wore off my Dad admitted the area around the tube insertion is sore. I am just so proud of him for handling this situation so well. The nutritionist warned us that he might have diarrhea and recommended that he take his feedings over a 12-hour period at night and while he sleeps. My Dad can still eat by mouth but it takes him a long while and he does not have much of an appetite. This way he can eat whatever he can during the day without so much pressure because he's getting his nutrition at night.
Tomorrow a dietitian is going over to my parents' house to demonstrate how to use the tube correctly.
Best of luck to you and your Dad with the tube.
 
Thelma; I'm glad that your dad is doing ok. The tube hurts for a couple of days and then you don't notice it anymore and the hole heals up just like a pierced ear. I was going to say a pierced belly button like Zaphoon's dancing girls have but this is a family forum so we'll stick with the ear.

As far as food into the tube I am only putting formula (Resource 2.0, Nestle, 500 calories / 237 ml tetrapack) 2 times a day. I haven't experimented with real food yet as I can still eat some things. When I first got the peg the nurses only told me about using the gravity bag but I soon graduated to using the syringe, at first using the plunger and then just using the syringe barrel as a funnel (thanks to Joel who pointed out how easy it works). It's so easy I'm doing it right now as I type this post!
 
Barry, I talked to my Dad's dietitian about Resource 2.0 (thanks for the tip) and it is readily available at pharmacies here in Montreal. She cautioned us that it might be too thick for the tube and told us to dilute it with water. Do you dilute yours? Also my Mom says that she was told that they should not put any food through the tube, just formula. Did you hear that? I thought it was strange because I know of so many PALS here on the forum who regularly put food through their PEGs.

(Yesterday in the hospital, the nurse showed us how we have to turn the tube 360 degrees once a day to help it heal smoothly and I said, "It's like a pierced ear." I had not thought of Zaphoon's dancing girls and their pierced belly buttons but it's probably a more accurate analogy.)
 
Hi Thelma, the Resource 2. 0 goes through the tube just fine without diluting. I just flush the tube with 60ml of water, pour the formula into the syringe (about 4 fillings) and then flush the tube with water again and I'm done. Both the dietitian at the ALS clinic and the one at the local health unit said to only put formula and water through the tube. Maybe they're just being over cautious but as I am only using my peg to supplement what I can still eat I haven't seen any need to do anything but formula. I have a clinic appointment on Wednesday so I'll ask about it. I'll also ask about the turning of the tube, no one has said anything about that. It sounds like it might hurt (I'm such a wussy!)
 
Yes the turning of the tube is what gave me the heeby jeeby's. Whenever I've gotten my ears pierced I've been told to turn the earrings every day so this is another way it was similar to ear piercing for me.

Thanks for all the advice, Barry! You're a champ.
 
thelma313,
So glad to hear all went well with your dad's procedure. I also have not heard of the turning the tube thing and my mom has had it since November so perhaps it's too late anyway.

When my mom had her tube put in I kept telling everyone "Don't let her lay flat on her back, she has trouble breathing that way" so when they called me to follow her to her room she was pretty flat and I said "She needs to be moved up", I think they thought she could just wait until she got in her room, I finally had to lift her forward and lean her to her side because she began to gasp for air but I was afraid to move her so much after the surgery. That was about the scariest part of my feeding tube experience so other than that they were a great bunch.

Back on the other subject we mostly use formula and flush it.
 
thank you everyone to reply to my post!

Is there any tube feeding power nutrition in US or other country ?
I mean "tube feeding formula power ", just like the milk power , that I can easily buy from US ?

Is there any this kind of TUBE FEEDING POWER ?


THANK YOU .
 
Status
Not open for further replies.
Back
Top