with 10 rads done and 23 left and 1 out of 6 chemo done the first 2 weeks went great. No nausea and didn't need the pills. Mouth sores started on the 3 hour trip home. Will remember to have the soda and salt water in the car this week. No terrible fatigue yet, been too busy for that. My husband is a Pastor so week-ends are busy when we are home. He is still speaking which is wonderful even though he lost a lot of his voice after the first surgery. Peg and port are scheduled for Tuesday. The doctors sure have different opinions on this. Wish he could pass on it but better safe than sorry.

You sound like you are on top of things. Any chance you are an effective list maker in normal times?

Best wishes with tomorrow's surgery for the peg and port. I always think the same, so much better to have it before its needed than after it becomes a problem. He will be sore for a couple days after the surgery. If its alot of pain ask the doc for strong pain killers he can take. Let me know if you need any peg pointers. Best wishes!

Yes I am always looking for any pointers. Just talked with someone who's mother had one put in and had such pain they kept her overnight. The daughter insisted that it should be checked and they were confident it was fine. Finally the next morning the doctor reluctantly checked and sure enough it needed to be loosened. Unnecessary pain for someone older. I have been told yes and no on putting my own food through the PEG. I don't want to rely on Ensure with all the sugar. I plan on continuing the carrot and fruit juicing. I'm sure I will be throwing all kinds of healthy stuff in the blender and diluting it. I had lots of practice with 5 kids and even with my daycare kids. I came up with the idea when my son was 6 months old and looked so skinny. I put meat, potatoes, veg. and milk in the blender and then in a bottle with a big hole in the top. Breakfast was scrambled eggs, baby cereal, fruit and milk. He beefed up quick in just a few months. Glad he decided to go with the PEG. I can see how difficult it is to swallow already.

You should be given a prescription formula which is more nutritionally balanced than the over the counter ones. There are many different ones with all different calorie contents. Most are either 250, 375 or 540 per can. A medical supply company will deliver cases of formula along with all the other necessary accessories that go along with it. You should also ask for a visiting nurse from the hospital to come out a couple times to check on the feeding tube usage.

It is not unusual for the tube's plastic to be placed tightly against the stomach when first inserted. It can easily be loosened. Nor is it unusual to spend a night overnight in the hospital after having one placed, especially when having a port done at the same time. You can be pretty certain your husband will feel sore for at least the first 24 hours, maybe up to 3 days. Make sure you get pain meds for home and also ask for a home feeding pump so he can have night time feedings done while he sleeps. Makes it much easier to get all his daily requirements.

Best wishes with everything!

Week 3 and what a change. Sunday the sore throat kicked in although the mouth sores that started on the trip home Friday are a little better. Yesterday was Peg and Port day, long day!!
Waited over 3 1/2 ours to go into surgery. Today was busy with appointments and learning how to use the PEG. Before noon the throat became drastically worse. I hope this might be from the tube being put in also so there's hope it will improve. Did not get him to eat much or drink which is not good. Tomorrow I will take charge!! With being sore and not wanting to use the Peg or rather acknowledge it was there I did finally get some water in. NOW FOR THE GOOD NEWS!!!! Our son in Florida surprised us and called tonight and is taking time off from work and flying home for 3 weeks to watch his brother who is 13 while we are gone all week. This will cover the last 3 weeks of treatments. What a relief to my husband, he feels so bad leaving our son. He won't even hardly miss us with his brother home, they'll have a good time. This makes me really proud of our son in FL, I guess he is a pretty responsible 26 year old. I'll be busy cooking on week-ends now, he really appreciates home cooking!!!

That's great on all fronts make sure he has decent pain meds... And njoying your time with family.

Good for your son! Ours came out to visit during the last week of therapy - it was wonder to have him. It's nice to get that 'maybe I did sometime right as a parent' feelings. Best wishes and keep on truckin'

The feeding pump was essential for my brother and if he is to take adequate pain medication he MUST anticpate the constipation that often results and deal with it before it happens. I can't stress how important I think this is after my brother's experience. Best wishes to you, your husband and lovely boys. Linda

[quote=Christine

It is not unusual for the tube's plastic to be placed tightly against the stomach when first inserted. It can easily be loosened. ![/quote]

That's what is driving me crazy with pain right now. How do you loosen it?

Not sure if you have a stitch holding your PEG tube tight. I did so I just cut the stitch.

Thanks for responding. It actually is the round disc that keeps getting tighter
and tighter. I cant figure out how to move it away from my skin. I'm afraid of messing something up but its driving me crazy and causing me a lot of pain.
,

The "round disc" is usually just secured by a thread tied around its "neck". You can snip the thread - carefully- and then move the round disc up a bit, then put another thread around it and tie it off. Since the tube and round disc is a one size fits all, many doctors leave either too little or too much room in placing the round disc bumper or at least that was my experience over the last three years of getting the tubes in.
Or have the doctors do it over - right this time-. The measurements should be when the patient is lying flat and then again when sitting up, and adding them and dividing in two.

Also there is a whole internet forum on putting real food down a feeding tube - if you are interested, I'll post the link - My wife is more comfortable with me doing Jevity for breakfast and lunch but we do our dinner of the exact same food together with the Vitamix.

Sorry you have to deal with this.
Charm

I have had both a PEG tube and a J/G tube. I have found the plastic disc (round plastic piece by stomach about the size of a half dollar) to be easily adjusted. When its too tight it can cause alot of discomfort. I adjust mine myself very easily. If you bend the disc almost in half toward your stomach, you should be able to very gently slide the disc outwards. Just be very careful not to pull on the feeding tube while you move the disc.