I was horrified to read your post. What a nightmare. I had my PEG tube placed by a GI that was highly recommended to me. That was just before my surgery 2 months ago. I still have it in and hardly notice it. I had a large BOT tumor removed and still am not able to eat by mouth. Radiation is causing swelling. I'll have it in for about 3 more weeks, when radiation is finished. What a difference things make when you have people taking care of you that know what they're doing. I'm glad to see you are now going to someone else. GOOD LUCK

Mariam,
I still reeling from your nightmare! As long as I have been here, this is the worst PEG nightmare I have heard to date. This sounds to me like skilled nursing is required. Will your insurance pay for nurse in home visits? This is well above and beyond standard caregiver duties.

Gary,
We have visiting nurses once a day.

Sophie H, I'm glad you know about the valves...My only advice to anyone so far would be never to let them keep a valve stuck in the tube. The red caps fly off, period.
We had a wound nurse who we called up to see him daily.

Liz, yes, I believe it is a fistula. (I probably missed that meeting-mom and I care for him on 3 day shifts and she usually has the important doc visits) But I know it is healing from the inside, must be packed, and takes forever to heal.

Coley1,
Four times!?!

I think they let him go because the hole has gone from the size of a quarter to an irregular nickel and I hope I have made it clear that his staph infection is gone. It just spews and his burnt skin is trying to recover and it is very very graphic. Frankly, he gets cleaned up and bandaged faster under our care than in the hospital.
I started this post at breaking point. I think in reality he is improving but I am so frightened of another infection or something bringing him down, and I hate poking gauze inside him.
This tube is a sick relationship...It's his lifeline after all.
Will know more in a few days.

It sounds like you have some good nurses coming to the house- hope that will continue- I know you are glad he is home, even tho that is hard on you all as caregivers. How is your Mom holding up through this? Amy in the Ozarks

Don't be afraid to use some sort of tape to secure the end of the PEG tube, so that it doesn't 'leak'....Buzz had a problem early in treatment, but after spilling stomach contents on his bedclothes two nights in a row, he decided to do paper tape around the stopper.
Hang in there, sweetie...the worst is SURELY behind you!

Lois & Buzz in NC

JAM,
My mother is doing well considering she has been leaving Dad only to be with her brother in hospice throughout this (we buried her brother on Sat.)
She and I have our own issues so we found it easier to do 3 days on and off, we meet to pass on info and show each other new skills and then whoever is leaving runs as fast as they can out the door! We update each other on the phone twice a day.
It's my fault really but I realized in the beginning that I couldn't handle them both..his needs and her emotions, a feeling I think has become mutual.
She's always happy to see me come and 3-4 days later ready to take over so it has worked out well. She is exhausted, that I know.
I can't imagine the caregivers who are full time alone.
When I am off, I do miss him though.

Sounds like you have worked out a pretty good routine- and I can relate to the "heading for the door" - especially for your Mom. Hopefully she goes somewhere she can get some rest while you are there. I don't know how long they have been married, but if it has been a good marriage, the emotional pressure on her is enormous-not to mention what the strain of providing this level of nursing care can do to someone untrained. The same goes for you, by the way, altho your emotional attatchment is different. I once tried to list the things I had learned about myself during John's illness and quit after 3 pages. I may try again later to see what "stuck". I had some mentors to lean on - my Mom took care of my Dad for years after a horrendous stroke- my best friends have an MD child who has required round the clock care for the last 8 years and is losing ground daily. And 2 cousins died of leukemia in their teens- their Moms left an indelible impression on me. Altho this is an Oral Cancer forum, it is also very much a forum about getting through what life throws at us and remembering that caring and sharing and loving are really the most rewarding things we can do. Keep looking forward, Mariam, and give your Mom a hug for me. Amy in the Ozarks

Update,
He went back to the ER on Nov 14th because the visiting nurse thought he was getting a cold. His tube was pushed down too far in his stomach so they gave him a new tube at the ER. Then the next day he saw the head of surgery and wound nurse and they put in yet another tube. The surgeon said a new PEG site would be too major of a surgery and that it was no guarantee that it would heal any better; and said once again that it is a bad situation but deal with it. Then the wound nurse put an ostomy bag/appliance over it and kept him overnight at hosp. It worked! He has to dump it 3 times a night but he has independence and is home. And we don't have to pack his fistula/constantly change his bandages anymore!! Dad is home now and I have had a break. Mom said he walked to the post office on his own.
He still isn't able to speak, eat, swallow and is still on suction. But the bag is a major relief. I am trying to get back into the flow of things..I had this precision type discipline during his treatment that I don't have now.

Dear Mariam, Each day is a step in a new direction, for your Dad, your Mom and you. Some of those steps will be positive, some may prove to be setbacks. But taking each step, each day, is a victory in itself. In my memory as a member of this forum, I have never seen anyone have the peg problems your Dad is dealing with. What a challange for everyone involved! Wishing you as much strength as you need to go forward and sending you hugs when you need them. Amy in the Ozarks