mom had a peg tube inserted into her stomach about 3 weeks ago they have tried several foods etc... but she is still only pumping at 40ml/hr (apparantly should be at 80ml/hr?) and is vomiting almost every day?? any suggestions, is this normal? for how long?
Sunshine,
sorry to hear your mom's having difficulties with her tube feedings. I never used a pump, and had no real problems with my tube feedings. I'm sure others on this site will be able to provide some info.
Good luck
There is a product called Carnation VHC. It can be ordered from a pharmacy or the company that is supplying her cans now. It has 560 calories per can and my husband tolerated it quite well. Her doctor may know about it and may be able to advise you. I'm sorry she is having difficulty. We had some problems in the beginning as well but as he got used to it, it got better.
Add an extra can or 2 of water and it will help her tolorate it.
Dont worry so much about the speed, it will be able to get increased when she stops getting sick from the feedings.
Some formulas arent easy for some to digest. Talk to the nutritionist or whoever prescribed the formula. There are many different types out there. Some are easier on the stomach.
What is the formula that she is on?
I went thru several formulas before I had one that didnt make me sick.
I use the Carnation VHC also. I order it thru the Amazon link on the forum pages so OCF gets a small kick back. The Carnation VHC is very thick so you must add a can of water to it. I mix one can of VHC with one can of my regular formula and one can of a health food hi protein liquid. Do not do this unless the doctor oks it and she is able to tolerate it.
Vomiting "almost every day" three weeks after getting a PEG is NOT NORMAL and its' almost unbelievable that the doctors have not addressed this more seriously. I used "almost" because unfortunately it is very very believable based on my experiences of how cavalierly PEG problems are handled. It's as though the default medical assumption is that the patient is doing something wrong.
Have anyone considered any anti-nausea medication?
I can't add anything else except sympathy here as Christine is the resident OCF expert based on her hard earned knowledge especially on pump rates etc.
Carol couldn't tolerate a couple of formulas then switched to Jevity 1.2 and tolerates that just fine. She started with bolus feedings then had to graduate to gravity feedings. Too much formula too fast made her nauseous and vomiting. The anti-nausea pills didn't work.
Just recently she wasn't able to do her feedings. She would vomit every time afterwords. She woke up one morning with her peg sucked into her abdomen. If it wasn't for the ports (Ross 18FR) it would have been totally gone! Come to find out the balloon had entered her bowel. Has anyone heard of such a thing? One of the nurses tried to blame it on us, "because it just doesn't happen". Needless to say, him and I got into a heated argument.....he's an arrogant SOB and doesn't play well with others. Carol now has a new PEG and doing wonderfully. We also fired her Primary Care Doctor, finally, and her new Doctor is great.
Charm is absolutely correct that the medical world doesn't provide much help or support when it comes to the PEG as in Carol's case. We learned everything about the PEG from this forum and googling. And, unfortunately, the patient has to do their own experimenting to get their nutrition intake.
Linda
While no Internet web site can hold a candle to OCF in terms of relevance and excellence for oral cancer patients, "PEG" issues are a special subset. I thought I would share a site that specializes in feeding tubes that was recommended to me by my home care medical supply company's nurse.
Here is a pdf chart that breaks down all the potential complications for Home Enteral Feeding - a more generic term that encompasses all feeding tubes - G & J & NG. Although technically a PEG is only a G tube inserted a certain way and while all PEGs are G tubes but all G tubes are not PEGs, once the G tube is in, this chart applies even though it does not use the term PEG.
PEG complication chart Charm
The "PEG" complication chart is an excellent guide which every person having a feeding tube should download. As in Carol's case her tube ended up going into her bowel. Her 1st Primary Care Dr. likened the tube to a straw....it goes in and out. Well, it isn't suppose to go "in and out"! So, that was the last straw with that Dr. Carol's new Primary Dr. immediately took action hence the new tube. There was never any pulling or pushing on the tube as that nurse had implied.
There is another web site from our friends down under that provides a tube feeding guide PEG only. It is a guide for Aussie direct support workers but is invaluable for people who are having a tube placed and for their caregivers.
http://www.goforyourlife.vic.gov.au..._a_guide_for_direct_support_workers?openLinda
Linda, yep the PEG issue happened to me too. I know of 2 others on here who also had it dislodged. Mine happened while I was bedridden in the hospital. An overzealous doctor for some odd reason was checking my stomach area and pushing really hard until I told her to watch out for my PEG. Dont ya know a couple days later I was in agony as it became embedded in my abdomin wall.
Your link is a good one!!!!!
Charm....that chart is amazing!!!!! This info every single person who has any type of tube should have at hand. Excellent link
Linda
Excellent manual from down under. My only quibble was it's warning in bold [quote]Do not put pureed food down tube. Only put
prescribed formula down tubes[/quote] As my little column in the Post described, using properly prepared real food is a godsend if your PEG is not just temporary.
Plus I can't help but wonder if the liquid nutrient is so great, why don't hospitals just close down their cafeterias and food services to save money and just provide Ensure to everyone since most patients are in for a week or less?
Charm
Christine,
When Carol was in the hospital a couple of the nurses would pull and yank on the tube. I told them to quit doing it but they looked at me as if I didn't know what I was talking about! If Carol hadn't been so doped up she would have swung at them. LOL
Linda
Charm,
LOL. Could you imagine if they shut down the cafeterias and have Ensure vending machines? Someone would be jumping on the bandwagon patenting recipes and the like for tube patients! The medical profession is always touting proper nutrition, why not proper nutrition for people that can not eat orally, temporary or permanent?
I still don't understand why there is so much indifference from the medical sector in regards to feeding tubes. A patient finds out they need one, have it placed....bye, you're on your own.
Using "prescribed only" formula is a cash cow...and many institutions still use the smaller tubes. Making it impossible to get pureed food down without clogging. If they went with larger tubes, ie 18fr, for adults, pureed foods would be practical. Shands-Jax standard size is 18FR, they realize the problems with smaller sizes and understand patients may want to use other foods besides the formulas. That's the sense I get from the Drs. anyway.
Linda
Linda, poor Carol !!!!! No wonder she had problems. Its amazing how some medical professionals are so wonderful and on the ball and there are some so ignorant.
Linda
It's so hard to get comprehensive information on HEN. (I like that acronym) For example, lots of internet sites extol the "button" or flat feeding tubes made by Bard or Mic-key, yet the anti leak valve in the buttons is only 12 FR. Likewise almost all extender tubes are only 12 FR. I finally got a 16 FR G tube which handles the Vitamix food pretty good even with the narrow 12 FR extender and since it's larger than the extender tube, it does not clog very often. I am learning piece meal by cross examining each doctor that puts in a new feeding tube for me. So far I am on my 4th g-tube since March 2009 and next one scheduled for end of August, beginning of September.
Charm
Yeah, Carol has the mindset of "I've told you once, I've told you twice" do it one more time and you're mine. Then she'll say "I told you". LOL
Charm
I didn't know the 16 FR would work that well with pureed foods. You definitely have been experimenting and making it work for you. Good info to know and to keep in the back of my head just in case. Keep grilling the Docs, they may learn something from you.
The adage of "the patient is their own best advocate" rings very true.
Linda
Hey Charm,
That chart is a font of information! Wow...why don't they give that out to all of us who go home from the hospital with the patients who have had a PEG tube placed? Thank you so much!
Susan