I did rinse it with some water after the Ensure...but probably not enough. Thanks for the info. I just put some more in before he went to bed and it seemed to be a little easier this time. So scary that I am going to mess things up and make him worse. I was also wondering about putting liquid vitamins in him. The Dr. seemed to think it was not necessary. I am a firm believer in good natural vitamins, especially when you are not able to get the natural nutrients from your food intake. Any thoughts on this as well?
I have to agree with Deb in the fact that there is very little follow up with patients after they leave the hospital. It is such a stressful time and here we are dangling trying to make our way through each day. This site has been better than any other info I've dug through.

Thanks to all of you!

Susan (And my Dad, Ron too!)

I lived off of nothing but canned preparations that are medically designed and balanced for nutrient. You are likely not going to improve on that right now. When he gets to the point where you can make him blended smoothies you can do what you want. Just be sure your docs know what you are giving him. Even vitamin supplements, some of them are not good to be getting during radiation, chemo, etc. as they impact other things in patients, that are not problems in the normal population. Run some more soda through that PEG it may take many forced bubbly flushings to really get it cleaned out.

If they haven't told you, he should have it sitting up, food at room temperature, and stay sitting up for awhile after feeding, or he can get nauseous easily. Also for many people including me, having the drip rate too high made me want to throw up. Add at least two cans of regular water to three cans of ensure in the bag, so that he stays hydrated, and that also thins the solution for easier cleaning out of the tube.

Holiday weekend. Had hoped to see more people offer you their suggestions on this as all people deal with the PEG a bit differently.

Susan, sorry I have missed your post. First welcome to OCF. You will find lots of help and support to get both you and your father thru the next few weeks. As a caregiver, make sure you also take time for yourself.

Are you using a pump for his feedings? If your father has not been given a pump ask the doc for one. Also most large hospitals provide a visiting nurse service to help with the peg tube. My nurse came out once or twice a week for about 2 months. I lived 45 minutes away from the hospital, way out in the woods and they still came out.

Make sure you are rinsing the tube with luke warm to warm water. Cold water will make his stomach cramp and hot will burn him. Always follow up the feedings or any medication given with at least one full syringe of water to rinse the tube. If he is running a pump overnight, a flush in the middle of the night is a good idea too. Ive had many many clogs due to being too tired and lazy to flush my tube in the night.

Now that he has the tube, make use of it. Medications can be given thru there, ask the doc for liquid meds. Some pills can be dissolved in warm water and given too. Before you do any meds thru the tube.....ask the doc. Not every medication was designed to be given like this, some are time release which can only be swallowed. As his treatment progresses, it will become more difficult for him to swallow pills, thats why its a good plan to begin trying to do his meds thru the tube.

Even with having a peg tube, your father still should be swallowing everyday or could lose that ability. If eating becomes difficult, there is a link at the end of this post with easy foods. Pay close attention to how many calories and fluids he takes in daily. His intake should be 48+ oz water and 2500+ calories per day. Even better is 3000 calories, a healing body burns calories at an incredible rate of speed.

Hope this has helped.

http://oralcancersupport.org/forums/ubbthreads.php?ubb=showflat&Number=94621#Post94621

Susan,

Welcome to OCF, glad you found us, sorry you had to! You've mentioned that your dad was feeling cold, he's on Fentanyl which can cause low blood pressure (hypotension)...one of the signs of that is being cold. Fentanyl depresses the respitory system and lowers the heart rate...something to be aware of. I had to walk around all bundled up...even in the summer in 90+ degree heat.

Keep your chin up

Eric

Susan,

I was also on the Fentanyl patch. It took my sister a couple of days to realize that it was the patch that was making very sick; nausea, vomiting,etc. I was very weak from it all. We removed the patch and had the doc prescribe a liquid for the tube and I recovered immediately. That may be what's happening to your dad.

I've also had my share of peg tube problems and both the soda and forced water have worked. With the soda I have found that if you let it sit awhile it will break up whatever is clogging it. I am not strong enough to push water thru so I rely on my husband or my son to do that when I need it. It's been awhile since I've had a clog because I'm much more careful to make sure my food is diluted very thin to get thru the peg. I don't use a pump or a drip, I feed myself with a syringe; a personal preference. I also take a liquid supplement and make my own natural foods which have been approved by the docs and the hospital nutritionist. You should run the question of supplements passed your doc while he is in treatment; I didn't add them til after tx. Hope this helps.

Pat

I had a very different experience.

Rather than having a Home Service Nurse come to my home I opted for twice weekly PEG check and training appointments with a nurse/nutritionist at the Nutrition Services Center (on the medical campus).

I got follow-up a calls from Gastro and the Nutrition Services Center for the first few days and my first follow-up appointment was the day after placement.

I was very PEG-phobic and the doctor at the Nutrition Services Center was a real God sent. They followed me until several weeks into RT, then fully transitioned me to the Dietitians at the Cancer Center.

My dad was so cold when he was getting his tx too. He was cold until about one month post treatment. We also had the problem with the PEG tube and were clueless, they took xrays to make sure there wasn't a blockage. Once he was put on the drip (super slow) he was fine. This was only during his tx. Once tx is completed he will be so much better. Everyone here is so helpful. Ask questions, it seems like the drs don't really explain things too well. Good luck and God Bless

Susan

As far as I can tell, Don B is unique in having an option to get checkups on his PEG and guidance on its care and handling.
I had one visit from a home nurse who went thru the basics of how to hook up the gravity bag and insert the Y extender and that was that. Nothing else. I've had zero help and already am on my fourth PEG in 18 months due to leakage and falling out. But I have overcome all the clogs, spurts, leaks, infections, granulation tissue etc with tips and hints right here from OCF.
Your idea of putting real food instead of high fructose corn syrup solids is excellent but IMO premature at this time. It is so hard to get adjusted even to the nutrient. I'm surprised you're using Ensure as that is not covered by most insurances nor home medical services. Typically a prescription nutrient like Jevity 1.5 is given. I've used Ensure while on trips and for the last month of my first Radiation treatment but otherwise use the jevity 1.5 along with wholesome food in the Vitamix but it took several months to work up from the gravity bag feed to the faster syringe. As Christine shared, many find the feeding pump to be more comfortable and tolerable as it can be set much slower than the gravity drip (which is slower than the syringe bolus push)
You sound like a great caregiver.
One final tip, I always "sanitize" my feeding tube with a nice glass of wine put down my feeding tube... It also helped boost the effects of the pain pills. Not mainstream medical advice but it has worked very well for me
Charm
Charm

OMG!! I am overwhelmed at all the responses! Thank-you! Thank-you! Thank-you! First off is that Daddy has a syringe type plunger that they have us using. I have over the Holiday weekend become a little more adept at using it. (You will not believe how many YouTube videos there are out there on this type of feeding! YIKES!!!) His 2nd chemo is tomorrow along with his 2nd week of radiation as well. I'm waiting to see if we have the same side effects as we had last week before I make any other adjustments to his meds and feedings. So if he gets the chills again we will know it is from the chemo and not from any of his meds. I am STILL at a loss as to how to get more nutrients in him. He fights me every step of the way. This morning he are fairly well. He managed to get a small bowl of soggy Rice Krispies in him and I cut up some small pieces of watermelon and 1/2 an English muffin lightly toasted with some peanut butter. This was amazing to me that he ate most of it. But 2 hrs later when I asked him if we should put some Ensure in him and maybe a little of his juice he said, "NO. I am stuffed full and I am sick of that damn Ensure!" And with that he left the house! He is, obviously, old enough to do what he wants. And quite frankly the nurses, Dr.'s and I have gone over all of this with him on several occasions. I personally think that he is asserting his independence as long as he can until things get worse. Which I can truly understand. Patience...I know! As for the wine Charm...that would be for me!! Daddy has not had a drink in over 35 yrs. He is a recovering alcoholic, so no drinks. My daughter teased him the other day that she could hook him up with some pot! Boy did she get a look from him! So my biggest battle right now is getting more food in him. But I truly think it will come. You are all wonderful and I am so darn Blessed to have your advice! Once again...Thank-you!

God Bless You All,
Susan

Susan,
Welome to OCF. I can not think of anything to add. I will restate with what Christine has already told you, as a caregiver you do need to take time for yourself. Your dad is blessed to have a daughter like you. Keep us posted on how he is doing.