Rita:

Keep working your jaw, its very important to avoid big problems. Ask your doc for tongue depressors and stack as many as possible in your mouth and hold that for 7 seconds 7 times per day. When you think you have a wide enough opening, slide in another one or two to stretch your jaw. Do this minimum 7 times per day. Its so important that you do this so you dont end up with trismus. I wish somebody had told me the importance of working my jaw. Here I am now only able to open my mouth 3 tongue depressors wide (about 1/2 a pinky finger). Ask your doc for a therabite, that will help you stretch your jaw, dont take no for an answer. Or in my case always being told to go ask a different doctor and not one would get a therabite for me even though I desperately needed it.


Pete:

Your flow rate is pretty high. I had started at 40 and moved up to 180 which was my max rate. Everytime I had problems with my feedings, I had to go back to 40 and start over trying to build up the rate. Which for me was many times that the feedings made me sick. It could have been the rate, the formula, or just basically having a weak stomach and sensitive digestive system. If you have alot of "throne time" try slowing the rate and watering down your formula.

Az,

This is a post I did in March of 2007. See if this helps.

Try Carnation Instant Breakfast VHC. It has 560 nutritional balanced calories in a 8 oz can and will cut the misery and the time in feedings. You order it thru your pharmacy dept and some have suggested that if you get a prescription for it, your insurance company will pick up the tab. I only pay about $32.00 per 24 can case at Walgreens. That's only $5.00 a day for over 2000 calories. Click on this link:

http://www.nestle-nutrition.com/family.aspx?objectID=86E49EB3-BE25-4B16-81D7-235E6F6E5183

Under the PURCHASE PRODUCTS tab, select FIND A PHARMACY NEAR YOU.

Under the PRODUCT NAME pull down, select Carnation Instant Breakfast Lactose Free VHC and fill in your zip code and they will give you a list of pharmacies that carries it.

At the top of that list note the Product Code and NDC Number in case that helps you when you call the store. When I call Walgreens it only takes a day or 2 at the most to get it delivered to the store and they call me when it's in.

You can also order it online but it usually costs more and takes much longer to get.

No, I do not work for the company nor do I get a commission (I wish) but this product made my feeding life during and post treatment much much easier and I am sure it will do the same for you.

As a matter of fact, David, I plan to get some VHC later on, so thanks for the ordering details -- I am a lazy fellow, and retirement has made that worse, so a can of nourishing food for breakfast is just the ticket, plus some coffee of course!

BTW, I went to my favorite bakery/cafe yesterday and had my first cup of coffee (cafe au lait in the big fat ceramic cup) since my surgery in late June -- It was great, but I'm going to have to use the cardboard cups for a while because my new tongue wasn't cooperating with the big fat cup and I was spilling a lot. Also, had to wait for it to cool down.

The barista and I were comparing scars; he had an elbow ligament replaced and they harvested it from another part of his arm -- But my shark-bite wrist trumped his little ligament scar, plus my slit throat and trach hole are pretty good stuf. I feel like a big kid!

Christine, I just tried jacking the flow up to 160, and I could feel that one building up, plus I get a sweating forehead as a warning, so I put it back down to 125 and that seems OK so far.

I wonder what has changed internally because post-radiation two and a half years ago, I would routinely gravity-feed two cans in fifteen minutes, which is a flow rate of 2,000 ml/hr!!

I do like using the pump, however, and it's not difficult to stop it and disconnect when I need to be un-tethered. I just wish the batteries worked so when I move it back and forth between bedroom and living room I wouldn't need to redo the settings (did I mention that I am lazy?) -- Sooner or later, I will be taking the little sucker apart to see if the batteries can be replaced without too much fuss.

They called today to let me know they will insert the PEG on the 10th of Sept. so I am glad it will be in place prior to radiation starting. They said they keep you overnight when they do it. I did not know that. Did they keep you all overnight?

I had to reschedule my radiation simulation... will do that next week instead. Got the stint made so that part is done.

One step at a time ...

Hope you have a good day.

Alot of people are sent home later in the day after their PEG is installed. I also had my port done at the same time. I was kept overnight because I was pretty sore. One advantage to staying overnight is the next morning I had my radiation mask made while still a little groggy from the pain meds.

Pete: Glad you were able to adjust your feeds so it works better for you. The 2 cans using the flow rate is amazing. I had trouble from day one with that method and also couldnt just push a can in slowly either. Both ways made me puke it all back up and that stuff sure tastes bad. I ended up losing a ton of weight and got dehydrated which landed me twice in the hospital. The pump and my nutritionist saved me by introducing overnight slow feedings.

Give the overnight way a try. Put 4 cans and a little water in a bag and set it for whatever you can tolerate (125 is pretty good). Gotta get to bed kinda early like 8 or 9 and let the pump run. Make sure you use a couple pillows so you are sleeping inclined. Thats the really easy way. It also takes the load off doing it so much daytime.

My first PEG was done in outpatient surgery in 2005 -- Wheeled me in, knocked me out and put it in with an endoscope.

For the second one this year, I was already in hospital, so an aide and I walked down to radiation (first PEG was done by Gastro Doc), they gave me a local, and the Doc put it in using X-Ray (or Fluoroscope, not sure which -- If he had turned the screen a little, I could have watched it) and then they gurneyed me back to my room.

I found both of them to be a piece of cake, esp compared to the rest of the hacking and slashing and microwaving that I was enduring <grinz>, with the second one being easier.

Christine, I am back to 100 -- I took a can to bed the other night and when the 'food's all gone alarm woke me up, the bed and I were drenched in sweat!! I dunno what that was all about -- I think I'll try two cans tonight and see how that goes -- I normally read for a few hours in bed anyway.

Pete:

Try setting it back even lower like to 80 with 2 cans in and one can full of water and let it run overnight. Thats a trick to get extra hydration by adding water. For me, I had to add the water cuz my stomach couldnt tolerate straight formula.

You made me smile when you said you woke up full of sweat, sorry. One night my alarm went off and I found that I was drenched in formula....YUCK!!!! I would have preferred the sweat Another time I must have been having some weird dreams cuz I had the tubes all wrapped around me like spagetti on a fork. Sometimes I would start to run to the bathroom still connected to the pump. It took me almost a year to be able to look back and laugh at those situations and see how far Ive come.

Its all trial and error with the pump feedings. Hopefully by the time you get it perfected, you wont need it anymore.

Just to correlate(sp?)....Bill would break out into a sweat, usually after the first manually (gravity) poured can of the day. He would need several minutes to sit/lie still after his feeding to feel better. We were always trying to time his feedings around the two a day radiation treatments and the sweaty, queasy thing was a pain. Mostly happened in the mornings though...the rest went OK.

Deb