Way to go Gary You are one tough cookie. But please do stop at all railroad crossings:D Amy

Everything is healing up nicley. The doc took out the stiches in the neck on Monday.

So....I'm down to ONE major problem.

I still can't swallow well enough to get the nutrition in me I really, really need to heal at 100%. It's just too darn slow. It's not that the swallowing is painful....just not effective enough. Everytime I take a sip of boost (or something like it) I have to swallow about 6 times to get it down and not sure it's ALL goin down the tube it's suppossed to (that's just a small sip!!!). Just too much trouble. I'm seeing my main Dr this coming Wed and pretty sure he's going to set me up to have the PEG installed. It's not that want the PEG...because that just one more thing I have to 'ween' myself off of down the road, but, I MUST have nutrition and would welcome something that will get the job done RIGHT NOW!!!

I'm getting my 'hydration' through my port at the moment. The PEG could kill two bird with one stone.

Anybody got any hints on how to use the PEG. The do and don't dos, etc. I may have this puppy a while????

Oh well....like I said....everything else is coming along just fine and am CANCER FREE as far as any tests can tell at the moment. That's the main thing. The PEG thing is just a little bump in the road.

Gary, the peg is a "piece of cake" for most people. Keeping the area clean around the tube insert is just using good hygiene. [John wipes around his with Peroxide every now and then. You can put lots of things down the peg, providing there are no chunky particles. I pureed bean soup for John today. Counting the calories and H20 that you get each tube feed is the most important thing and remembering to flush well with water at the end of each use. John uses a suppliment called 2CAL-HN which has 475 calories per can. Takes 4 a day, plus Welsh's Concord grape juice [180 cal per 8 oz] or a pureed soup, etc. There are also some good milkshake recipes here that have lots of calories. You'll do fine with it and probably start gaining weight and feeling better quickly. Good luck, Amy

Just got caught up on your posts of last couple of weeks after not having internet for a bit. glad to hear all the progress and that you are cancer free and the end is near.

no question your positive attitude is contagious and helped me get through what was a much easier process than what you have gone through.

JAM...just seems like you the best source on here right now for the 'peg' thing. I'm supposidily getting this puppy tomorrow morning about 11am. They want it to be a 'stayover' which is fine with me to give it time settle in.


I just have tons of questions about the PEG. Don't get me confused with big 'debate' of peg or not to peg. I feel it's just a matter of I've had enough LOW NUTRITION and feel I'm kind of going the WRONG WAY here.

A couple questions......

Do they give accesseries at beginning (like syrynge, something to mesaure larger quantities like water, etc.

Is there a LIMIT on how much you can put in your stomache in a half-hours time?? an hours time????

Is there a 'wait' time you should wait before you can load (the max) again???).

Is there anything good for the FINAL...FINAL CLEANING FLUSH that will keep the unit smelling fresh (ginger ale?? Diet 7-up)

LOTS OF QUESTIONS....................

Gary,
I remember when I first had my PEG that I had plenty bouts with loose bowels. Ask about that and some relief for you if it happens. I had the PEG for approx. 9 months and it provided all of my nutrition from about week 4 of radiation until approx. 4 months after radiation. I believe it helped me heal as quickly as I did. I kept mine tucked in the waistband of my pants and it rarely caused me a problem. I didn't keep the site covered with anything like guaze, just kept it open and never had any infections, etc. I always followed my feedings with water and remember using soda the rare times it clogged on me.
Good luck with the tube and use it to help you get better.

Gary, there are folks on here that have far more experience with pegs than we do. But John has had very little problem with his. To answer some of your questions: They should send you home with several syringes that fit into the top of the tube. John's came with a pusher that he never uses. He just pours the nutrition down-thinned or mixed with water, broth etc.Example: He pours a can of 2CAL into a tall measuring cup, puts 16 oz. of warm water into a second measuring cup and alternates the two until the 2Cal is gone. Cold water or juice is uncomfortable for him. How much you can put down the tube at one sitting is really up to you. I think you will be able to tell when you are full. You don't want to make yourself uncomfortable. You DO want to get the right amount of calories and water a day so you will just have to experiment. John lost alot of weight between March and mid July [he was really sick] now that he is feeling better, he is taking 4 cans 2Cal daily [1900 cal.] plus Welches Concord grape juice [8oz =170 cal] plus Clamato juice mixed with a regular beer [240 cals]Gatoraid is good if you start getting dehydrated. We do try soups too, but most of the canned ones do not have alot of cals. You can fortify soups with powdered milk mixed into whole milk or cream. Egg Beaters are great to add to soups, etc. Never eat raw eggs! I went to Yahoo Search and typed in "high calorie liquid diet" and got some good info there. We also use Pepsid on occasion and Benefiber [all of his meds. go thru the tube.
As to using 7-up , etc. to flush the tube, I don't see why not-- it's more hydration. You'll do fine. Amy

Gary

Stephen is on 100% tube feed. He has had it since March and it has kept him alive. He uses nutritonal drinks that we get thru our medical insurance and they are mailed to us monthly. He takes in 9 cans a day = 2,700 calories. One to two cans tops via bollus feed which is thru the syringe. You need to do these very slowly holding it low so the gravity feed is slower or it will come right back up (via your mouth..)don't hold it too low or it will come back up thru the syringe(made that mistake a time or two). Stephen didn't tolerate the bolus feed too well and it was also difficult getting nine cans in a day doing one or two at a time with a few hours to digest in between(very time consuming) so we got a pump which you can use at night and its worked out great for us. It hooks up to an I.V pole and you fill a bag and connect it to the end of your tube and it slowly pumps all night while you sleep. You have to get used to the sound and it is a pain to get up and down to the bathroom but keep it in mind if you have trouble.

A couple of things on the tube...

*Ask for the holders that you can tape next to the tube site and it holds the tubing in place so its not flailing around. They last for a few weeks and then you can put a new one on when it wears out.

*Get extra tops with the caps on them for the end of the tube because they get stretched out and then when the caps comes off you can have major leakage.

*You'll be sore for several days after and it takes getting used to..my husband was very skittish about anyone getting near that area after but he got used to it.

*Gatorade thru the tube for electrolytes.

*A q-tip with some hydrogen peroxide around the site cleans it nicely. I put neosporin if it started to look red.

*Our nutritionist told us not to use the plunger for anything, just gravity feeds and just flush with water after each feed via gravity as well.

*My best advice is to do slow feeds and keep still after for a little bit. Stephen was on a drug called Reglan for awhile when he first started to help the body get used to and accept the tube feeds without nausea.

Anyway, that was our experience...I hope it helps some.
Good Luck and let me know if you have any questions on any of it.

HI My husband is due to have neck dissection 9-18 for small activity seen on CT Scan none on Pet.I read the post on not doing surgery and and now confused. We did get 2 opinionsDanaFarber and UMASS to do the surg just in case. I am confused now Laurie caregiver husband Mark $) IMRT and 3 doses cisplat for stage4 sq.cell in lymph node 6^cm

I'm in exactly the same place (Biopsy/dissection). I'm interested in how you're doing now that time is passed.

I'm especially interested in the after effects of the glossectomy for BOT. If they take 25% from one side at the base, what are the likely effects on speech & swallowing?