Jan,
I too am in awe that your nurses are not up to speed on the gravity bags. If your husband is on medicare, the bags and ensure are paid for through home health. The doctor needs to write a script for it. I imagine insurance would cover it too. Any city of moderate size should have a home health pharmacy that could fill it. Also make sure that the Peg is not being moved into the intestine when your husband enperiences the sucking in of the tube. You may have to insist on a dye study to see where it is and how it functions. John had to have one and that Peg had to be removed and replaced. A properly working Peg is a God send. It keeps the person totally nurished. As with Brian, John could have never done syring feeding. It would have been too much too fast. It takes him around 45 minutes to do two cans of ensure.
Remember the rule You know your own body. Don't let anyone blow you off. If you have questions-- make sure that they are answered to your satisfaction.
Good Luck.
Meredith

Thanks Meredith, we've asked our primary care doc for a referral to a gastroenterologist, since the surgeon can't seem to figure out why this "sucking in" thing keeps happening...good news is that things are going much better with the tube (aside from sucking in thing) and HURRAH, we finally got some gravity feeding bags from the company that provides us with the Jevity--still, I had to call them and ask if they had them, and none of the medical staff we talked to seemed to know...one nurse with VNA thought the Advantacare people might have such a thing. So, Jim is finally able to get more nutrition, we're up to 1700 calories today.
Question...Jim wanted me to ask if there are any tips for dealing with the mucus/gagging problem...I imagine water/fluids might help thin the secretions?? he is having difficulty getting more than about 16 oz H2O through drinking, gets a bit more through the tube flushings etc. Any tips on this would be more than welcome.

Jan

Hi Jan,

I too had the thick mucous/gagging problems you write about. There really wasn't anything I could do about it -- it was just something I had to endure. I would gargle with magic mouthwash to ease the pain and rinse my mouth with salt/soda solution. Rinsing my mouth with water would have sent me through the roof. It was like acid.

I can tell you right now 1700 calories is not enough. The body needs calories to heal, a lot of calories. I was consuming 2800 calories/day at 5'10".

Heather took Salagen to help thin the mucous and make it easier to spit out. She also got a suction machine with a yankeuer tip to suck it out of her mouth. The less mucous you swallow, the less nausea you have from it. Also, I think some people have mentioned that the carbonation in soda seems to help to break it up.

Since Heather started chemo, she has been on TPN. It supposedly is supplying all the nutrients she needs until she can use her PEG tube again. It is definitely worth asking about.

Rainbows & hugs,
Rosie

Hi Rosie,
I've followed your posts closely and was wondering how your daughter is doing? How are the treatments going?
In my prayers,
Mandi

Hi Mandi,

Thanks for asking about Heather. So far, we can't tell if the chemo is working or not. She had to postpone the 2nd treatment of the new protocol because her white cell count was too low, but it is up now, so she will be having the chemo today or tomorrow.

They have been giving her steroids to help keep the severe swelling down. So she does feel a little better. Other than the white cell count being down, all her other vitals are good. Her lungs are clear and her heart is strong, so we don't have any worries there. It is just a waiting game to see if she responds to the chemo.

Whether or not she responds, I'm hoping to take her home within a week or 2. She has been in the hospital a month now. Her sister and I can do almost everything the nurses do anyway. About the only things we don't do are give her injections and change the medicine bags on the pumps. With the help of visiting nurses, I am sure we can care for her just as well at home.

My wish for everyone is that you and your loved ones continue to improve and no one ever gets to the point that Heather is. This is just the most horrible disease. It leaves you with no dignity at all. But we do continue to hope for that miracle. As they say, it's not over til the fat lady sings and I don't hear any music yet!

Rainbows & hugs,
Rosie

Hi Jan, I can totally sympathize with you and Jim. I went throught basically the same ordeal six months ago. You have to find nutrition that is compatible in order to keep the weight on, I lost 34 pounds during radiation and 9 pounds prior to radiation because of tooth extractions. Gravity feeding is definitly the best, which is what I did and have been doing, I found that doing one can 5 or 6 times a day works out better for me, I also try to take and equal amount of water or gatorade at the same time.
The medications will cause all sort of BM problems, senecote worked for me after taking it as directed for a couple of weeks I tapered of until my body started acting naturally again and it will. I had one of the worst attacks of constipation that anyone could imagine immediately after starting tube feeding I can almost understand what women going through labor and cramping feel like. At least as I explained it to my wife she related that you girls go through something similar on a monthly basis, god bless you, it was hell.
As for the thickening saliva, soda water will thin it some but you pretty much have to work through it, I carry a spit bucket with me everywhere I go with either napkins, which I prefer, or paper towels. Immediately following radiation will be the worst, but it will get better also.
I hope this has helped, keep in touch with this site there is alot of good information that you would have to pry out of Dr.s and Nurses.
You are both in our prayers, be strong you can be cured.
Bill
stage III SCC base of tongue and left lymph node
diagnosed 9/10/2002
84radiation treatments
6 chemo treatments
radical neck disection
survivor, and proud to be one