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
Last edited by Charm2017; 02-13-2013 03:54 PM. Reason: toned it down