Pam,
The most important thing of all that you need to know about a PEG tube is that it can save your life - literally! Even with Dana's unusual issues with his, he always has said that without the PEG, he wouldn't be here. At one point it was the only way he could take nutrition and the necessary hydration. His first PEG was the button-type. (Do an "image" search on Google to see exactly what they look like...it's not scary, I promise!) It was installed the same day as his tonsilectomy and radical neck disection. From the very beginning, we maintained it by flushing it with water. This made handling it, maintaining it, and using it later on no big deal. He is diabetic and the edges of the hole never looked quite right. We kept showing it to doctors, and they kept telling us to keep an eye on it. We had decided to be more proactive about getting something done about it - right after his cousin's three day visit. The day she arrived, we went out to dinner. He was having soup, as that was the only thing he could swallow at the time. All of a sudden, he got up and went to the restroom. He's not sure if he got sick because the button popped out, or the button popped out because he got sick, but we wound up in the ER, where the ER doc said he'd never seen anything like it! The docs played "pass the buck" on who was responsible for replacing it. Four days later, the original general surgeon came in and replaced it with the balloon type PEG. Lesson learned: ALWAYS list your MO as your primary doc if you need to be hosptitalized. If we had, he would have been handled differently, and put on the Oncology floor, and had better care. (This info was from the patient advocate at the hospital.) Anyway, a few weeks later, Dana was late taking his liquid nutrition, and his stomach tried to digest the balloon on the inside! Off to the Dr. again to get the balloon deflated, the PEG adjusted, and the balloon re-inflated. By this time, we were laughing with the general surgeon about Dana's unusual PEG tube adventures.
He had it in for several weeks before he used it to supplement the food he was able to take orally. For the last couple of weeks at the end of radiation and a couple of weeks after the end of radiation it was his only was to get nutrition and hydration. At one point, the RO wanted him to consume 3000 calories/day just to maintain his weight. There was NO way he could swallow that much food! He went back to work with it still in, and was able to function just fine. He had it removed after he was able to consume all calories orally for a whole week. We kept a calorie diary to ensure that he was getting enough each day. We lined up the day's bottles of water (8) and made sure he finished them each day. Now that he's past that, it seems like we have nothing to do!
Everyone has different PEG stories-some get them and never use them...But we are huge supporters of using them. Using one doesn't mean that you've failed in some way, it just means that you've got a way to save your life!
Hope your visit to your MO went well. Hang in there!
Diane