Shadow

I apologize for jumping to the wrong conclusion since it sounded like you had both given up on getting adequate nutrition. I had recently posted a link to man who had chosen not using his PEG for anything but water as a suicide method. Thank you for filling in those details. A much better, fuller, yet infinitely sadder portrait of what you and your wife are going through.
Yet I can't help but hope there are counter measures and in fact know of some your team may not have offered such as parenteral infusion.

I found a lot of very similar issues and problems discussed on the Yahoo groups of Blenderized diets and and some list servs on tube feeders. You have more on your plate than researching them

tube placement: usually if the G tube area is destroyed, a J tube can be used. In the very worst case, when enteral feeding does not work, there is the option of permanent IV feeding. According to the Oley foundation site, people thrive for years and years on it.

Nausea / diarrhea/vomiting from formula : extremely common and some of these kids were near death until switched to a blenderized diet. It's just a question of blending the food you already say you do a little finer so it goes down the feeding tube. I personally notice a major difference between Jevity and the blenderized food. Why not just try putting your blended food down the feeding tube instead of the formula. It will be thinner than what you are drinking or else it won't go down.

My teeth and jaw are just fine, yet I have a major speech impediment due to surgery at the base of tongue, so I'm not sure what that means.
She may want to ask the speech therapist about VitalStim, an electrical stimulator that has helped many. didn't work for me, but worth a try.

I understand that not taking extreme measures such as parenteral infusion ( IV - no tubes - no stomach) feeding for life is not the same as suicide even if it means not meeting the nutritional goals needed to live . It's just the finality and fatalism that I am reading into your posts on this thread do not square with what I know has been done for others similarly situated.
Charm

Shadow, there are at least a hundred of different forumlas on the market. I was one who struggled with finding the right one and was very ill from several of the types I tried. Talk this over with her doc. Ask for a nutritionist to help. They may be able to give you a few cans of different kinds to try. Some formulas are milder and easier on the stomach than others.

Ive used a feeding tube for a very long time and picked up several tips to make the formula easier to tolerate. Maybe some of the following ideas will help your wife. Besides trying different formulas, the most common things which cause stomach discomfort when using a feeding tube are speed and consistency. What about using a feeding pump? If you dont already have one, ask the doc for a prescription for one. That could make a huge difference! You can program it to run slowly. Also adding water to the formula can make a huge difference. When doing a feeding, she should be sitting up or only slightly reclined, never laying down. If using a feeding pump, try to raise the head of the bed about 6" and have your wife sleep on at least 3 pillows so she is laying inclined.

Please suggest these tried and proven helpful tips. Never know until you try them. Its worth a shot!!!

Good luck!!!

I failed to mention in my last post that I do appreciate the responses and information I received.

For this I apologize.

It gave me additionsl directions to go in my searches.

As to the blended foods, this is something we have been discussing, and I think the clogging issue may be part of the resistance, in addition to the uncertainty of will her digestive system react to it the same as the fake stuff. I will continue on this front.

All of the responses I get about the VitalStim from anyone that tried it has been like Charms 'it didn't work for me', but, it's still out there, so it must have some positive responses, and is still an option.

@Charm2017 what type of oral appliance were you referring to that she would get from a prothodontist?

Thank you for your feedback and future responses.

Shadow

Since the tongue surgery, my tongue does not go high enough to completely touch the top part of my mouth, the palate.
So my prothdontist made me a "a palate drop". It fits snugly against my palate but having been made from a mold where I pushed my tongue up flush with it, when I put the palate drop in, now there is closure between the tongue and top of mouth.
It's not an obdurator or anything to do with my jaw or openings in my palate just the very limited motion of my tongue after being reconstructed with a free flap. The hope was that it would actually let me propel the food hard enough to swallow.
and it has worked for lots of his patients. But then none of them had radiation twice so they did not have as much damage to their swallowing muscles.
the palate drop does signficantly improve my intelligibility in that I can form the sounds clearer and louder.

I too was very very leary of clogging my tube or the difficulty of getting down regular food, so much so that I suffered through that dangling tube for almost two years because the doctors had convinced me that the tiny 12FR anti reflux valve in the "button" would clog, while the tube has no valve so it was 16FR
(FR is the measurement of the diameter of the tube, the larger the number the bigger the inside of the tube is)
Yet it has never clogged and I am talking full meals here;
for example tonight: chicken breasts, carrots, broccoli, onions, mushrooms, a cup of yogurt, chopped banana, someleft over soup, all thrown into the vitamix, at setting 10 for 2 minutes. Then I use a strainer just to be sure and pour it into a bowl and syringe it in. It would probably be better for your wife's stomach to use a gravity bag, just hold the strainer over the bag and fill it up. It took a little while for my wife to get the water ratio right - and you do have to add two cups of water. But nary a clog or problem.
I have never heard of anyone preferring forumla over a blenderized diet. I'm thinking of going full time but right now just doing dinner is easier.

Last, as Christine noted, the rate of the food or formula going down the tube matters a great deal. Many many of the blenderized diet people use only a pump at slow speeds. Even the gravity bag is too fast for them, let alone the bolus syringe. It took me a year to work up to the fastest way possible, filling the syringe and depressing the plunger to send it flying, rather than the "bolus".letting it drip down the syringe without using the plunger.

Check out the Oley foundation website or the blenderized diet groups if you need more convincing
Charm

[quote]I have never heard of anyone preferring forumla over a blenderized diet. I'm thinking of going full time but right now just doing dinner is easier.[/quote]What is the rationale for that? It can't be taste so is it that regular food is better accepted and absorbed by the stomach? This is all down the road for me but will loom up soon enough so better to get ready sooner rather than later.

I live off of a blenderized diet myself as I can still swallow liquids and some soft foods, however solide foods are largely out of reach. I believe there will be a time when I'll have to switch to a PEG full time and to be honest I don't like the idea but at the same time if that's what i have to do then that's what will happen.

I'm not a fan of the formula's as I haven't found one with ingredients I approve of as I'm generally very mindful of what I put in my body. This is actually why I enjoy blending and have an unnatural obsession with my blender. If you are going to live that type of life, having the proper tools is key which is why I recommend a Vitamix. With my blender I'm able to get the same consistency as the formulas and I can control my macronutrient breakdowns and make sure I get all my vitamins, minerals, antioxidants, etc...

I make a game out of it myself as I've shown where I can control some of my hormone levels, hydration, etc by my intake. It keeps my mind off of how bad it sucks not to eat solids. I still cook for my family as I love to cook, and sometimes it's hard but you find ways to cope. One of the ways I found that helps is to have conversations with others that share similar issues...like my friends on these forums.

Anyway I hope you and your wife find solutions that work, keep your chin up.

Eric

Don

I do not want to hijack Shadow's thread with the long explanation of my comment. Please see the link below for some info but I will be starting a new thread on real food / blenderized diet tomorrow that we can hash this out in detail.

Shadow
Here is a link that spells out a lot of info on the advantages of real food. Bear in mind that the majority of PEG users do just fine on formula since it is usually less than a year.
But just as your wife has experienced far more problems with the PEG (the first site destroyed?), it stands to reason that she may need a more aggressive solution.
BD pro & con

Charm

I have a vitamix also, and as mentioned, will liquify basically anything. I have a vegetable juicer too, which makes thinner juice without the pulp. Although, when going through my recent treatments, I preferred the canned nutrition due to the convienance, but it was only temporary. I did require TPN through my port when I lost too much weight back in 2010, and was unable to eat.

[quote=Charm2017]
So my prothdontist made me a "a palate drop". It fits snugly against my palate but having been made from a mold where I pushed my tongue up flush with it, when I put the palate drop in, now there is closure between the tongue and top of mouth.
[/quote]

I am definitely checking into this, and feel that the doctors have dropped the ball by not suggesting it. I was confused when you first mentioned it since my quick search brought up just info on dentures and bridges.

Thanks for setting me straight!!