Chris, you’re doing well, you just don’t have any previous personal experience to gauge yourself by. But, you really are. I couldn’t lie on my side for probably close to 6 weeks. I developed a post op infection, but I think the pain for me was just muscle pain, or, who knows what, but I can completely relate to what you’re saying. Even though I sleep on my back most of the time, I like that I am able lay on my side during the night at times.
Yes, putting water in through the tube is safer than drinking with thickit. I still eat regular food that is soft by mouth, so, I’d say I use the tube for probably 90% of my hydration and 20% of my nutrition (yes, I know those two add up to more than 100% lol)
You’d asked in another thread about what type of tubes others here on the forum have. I have the button type; the long/standard tube was changed out at about three months for this smaller unobtrusive style. If you go this route you will have a lot more freedom as far as clothing choices, as well as a morale boost, because it is easy to forget that it is there. There is a lot less of a “poor me” feeling going on.
You’ll work out your own routine, it just takes a while. For example: my standard breakfast routine almost every morning is one yogurt, as much coffee as I can get down (with miralax in it). After that, I get the tube, put in the coffee I couldn’t finish, then sometimes, if I know its going to be a long time before I will eat again, I’ll add some formula—most of the time, not, though. Then I put in my 2 oz of vitamins, and flush with at least ½ cup of water. Many times it is more water than that.
I mix up about 8 days’ worth of vitamins at a time, and keep them refrigerated in one of those bpa free sports water bottles. A person can add a great deal of “greenness” to their diet that way. I used to buy either bluebonnet liquid super earth (whole food based vitamin supplement) then I switched to Alive brand. Then, Whole Foods where I am stopped carrying the Alive or Bluebonnet, and I’ve started just crushing (with a hammer) the Alive brand tablets. I let them sit it water while I get together the other ingredients of my vitamin cocktail (fish oil etc) I have started adding a few scoops of a green superfood powder to the mix too. Not exactly what the label says is a daily serving’s worth, probably about 2/3 of daily serving, to amp up the nutritional and antioxidant level even higher. When I get all of the various ingredients in the bottle, I add water to it to bring it up to the 16oz line. That makes it 8 doses at 2oz each, and each is one syringe full.
We’ve talked about the 2 oz/30ml measuring cup here on the forum before. It is really nice because you can pour into it without having to hold up to eye level for correct measuring, and it holds the same amount as a syringe.
Other things that might help... if you’re using gravity feed (that’s what I do) you’ll probably only need the plunger if you’ve got a clog, or are in a hurry. If you wash the plunger in the dishwasher (especially) then the rubber tip won’t want to go down into the syringe when you need it. Which is real pain; because usually when you need it is exactly the time you’re not going to want to have another problem on your hands lol. So, just remember that oil works to lubricate the rubber end. Just a tiny dab of cooking oil of any type, rub it on it, push it into the syringe once, draw it back out, and it should work fine.
You already learned about carbonated beverages to help with clogs, Another trick is, if you’ve got a slight clog, you can just place your lips against it, and blow a bit of air into it to get things moving (I mainly do this to just get it started in the beginning of each use). I was in the ER a couple of weeks ago due to an injury, and when the nurse handed me my pain medicine, it didn’t start to move down, so I blew into the syringe and the look on her face was so comical, she said, “oh… yes, I guess that works” Right before this happened, we’d already had some excitement with the tube.—entertainment for all ha hah. While I was waiting for the nurse to come back with the crushed tablet, I’d gone ahead and hooked the tube to my port. It had been just hours and hours since I’d had anything to eat (thankfully it turns out), she took longer to come back than I’d anticipated. I hadn’t attached the syringe, thinking she’d maybe have one (she didn’t) … anyway, it was hooked up long enough to for a bit of air to build up from inside my stomach, and when I leaned forward to take the medicine cup from her, the end cap popped off of the tube, and the tube was like it was possessed, it waved around in a circle, and clear stuff (thankfully) from my stomach was flung everywhere. It was on my dress front, it was on the bed, it was in my hair… nothing like making memories.
Our forum has a good bid of accumulative information on PEGs. Just do a search. Also, there is a website that is just for those who are tube fed. The name of it is the Oley Foundation. It seems like this forum’s participants are fairly evenly divided between members who are parents of a child with a peg, and members who have the peg. You can search for tips on that site, and I benefited a lot from it. I found the suggestion for using (by prescription) Kenalog Cream (Generic Name: triamcinolone acetonide) on that website, this cream helped me with combating granulation tissue formation soooo much. (that in combination with getting the button style peg)
So, know that you’re not alone, there are resources out there to help you, and it will get easier! Best of luck to you.