Peg tube disaster

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chrisroski

Active member
Joined
Apr 12, 2012
Messages
93
Reason
PALS
Diagnosis
01/2012
Country
US
State
Pa
City
Philadelphia
Well the saga continues. Had the tube on Tuesday came home Thursday was suppose to have food same day. Stuff did not come till Friday night at 9PM. Likely I was able to get scrambled egg down. On Sat. morning we did the 1st feeding, just like the hospital did, and of course my luck, after the formula we did the final flush and all the stuff backed up, it looked like curdled milk. Trying re-flushing and pulling back on syringe and could not get it un-clogged, so had to go to er. They said because not flushing since 11Am on Thursday it caused the problem. They used ginger ale, which I did not know you can use any carboned beverage when this happens. They got so much stuff out, all looking like curdled milk. Went home, by that time due for another feeding & again all the stuff came back up the tube along with this brown stuff. I was beside myself and so upset. So I gave up. Tried to call Dr. but it was Sat & their not their. This morning we tried again, most of it went down, but for some reaon their is a small amount still in the tube. My daughter is calling my Dr in the morning, cause a nurse was suppose to come and check this and no one has showed up either. I'm so sorry I had this done, cause I can't afford to run to the er all the time. Has another else every had this problem?
 
Hi Chris,
Some formula will stay in the tube after you finish... Are you using a pump, gravity feed bags, or a syringe? If you are using a syringe, slow down a bit and allow your stomach to expand so that the formula won't backup into the tube. Does your tube have two ports? If so, once you pinch you tube off, you can take the connector off and flush it under the tap. Also get your supplier to give you a couple extra connectors...we lost the cap while traveling. We did have trouble at the beginning because Rog is on blood thinners and it was oozing. We have had the tube since the end of march and everything is ok now. The. Buttons have come off. There are only drops of formula backing up at the site and Rog showers without gauze over the site now....

Chris, have faith...this will work and you will be okay....you will feel better after a bit! You've been through a lot, give yourself some time. I know this change is hard... One of Rog's greatest joys was trying new foods and savoring great meals...I HATE eating alone, he is envious of missed meals. The only other option for him is starvation and dehydration. As his wife, I don't miss the choking, the spit up food, the fear of aspiration pneumonia, the weight loss. I love that we have more time together, he gets to spend more time with family and Marvelous Maddie...no matter his condition. I would think your family feels the same....

Take care,

Jen
 
Jen, That was a really helpful and supportive post.

Chris,
Jen is right—about everything 8)

Every time you uncap the tube, there is going to be varying amounts of food come up from the previous feeding. (even if you flush it very well) Its okay, and it doesn't matter if it looks curdled or not. Some mornings when I open mine for the first time, there will be nothing but a bit of stomach bile back up into the tube, other times, it will be the remains of my last meal.


It will help to expect that you will have some messy experiences before you get the hang of it. Everyone does. And, right when you think you have it down pat, you'll have some more unplanned "fun".

Try to use your tube as often as you can. Remember that the standard syringe only holds about 1/4 cup of liquid. So, calories aside, if your goal for just enough water in one day is 8 cups, you can see where you would be using it quite frequently each day. And, getting enough hydration will make you feel better. The more you are in the habit of using it for hydration in addition to nutrition, the more consistently the tube will stay clear of clogs. I think the standard advice is to flush with at least 30 ml of water after each formula feeding. And, if you're adding a few syringes of water for adequate water intake between those feedings, it will help too.

The inside of the tube (the part you can't see that is inside of you) is much smaller in diameter than the feeding portion. Something as small as a grain of rice can clog it.

good luck, it will get better, and easier.
 
So sorry Chris, hang in there!
 
Thanks for your answer. I am using the syringe. Seems to working a little bit better today. I guess it just takes time, but I am getting used to it. Also last night was the 1st night I could turn and lay on my right side. Was tired of laying on my back. This is all new to me and I know that it is going to worse in other ways, but I try real hard not to think about that, or I start crying, which I do from time to time. It's just so hard to believe that I have this and I'm sure everyone feels the same way. This is an awful way to live your life. Never in my wildest dreams did I ever think I would have this. God Bless Us All
 
Thanks so much, I will try the extra water also. I don't think they told me that. But usually I drink water with the Thick it stuff at least for now.
 
Also, you can just pour the formula in the syringe holder without using the syringe and let it flow in by gravity. After 2 and a half yrs I finally tried it this way and it is so much easier. Before we do a feeding, we gently push on the stomach to release gas andleftover stomach contents.
 
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.
 

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Well Rose I do want to thank you for all that information, it is extremely helpful. Seems like you have this so under control. God bless you. I know it will take time, but I do think that I am doing pretty good with it. My boyfriend & daughter help with the feedings, I hold the tube & they put the stuff in. Last night I actually ate some real food, mushed up hamburger & some mashed potatoes with gravy & a little string beans. Haven't really eaten any real food for quite some time. I still feel a little tired but the surgery was just last week so I guess that is normal, but I did do some housework today, which actually made me feel like I accomplished something. Waiting for the visiting nurse to come. Again, Thanks so much for your input it does mean alot to me Take care
 
So glad to hear that things are going a bit better with th peg
 
Thanks for your response. Yes my family has been so upset. I have 2 grown daughters & 3 grandkids. They grandkids came to see me yesterday and all they did was hug & kiss me & tell me they love me. It made me cry, but a happy cry. I have a grandaughter who is 11 one who is going to be 5 & a grandson who will be 4. They are just too cute. The oldest one is so pretty, they better lock her up tills she's at least 21. My kids worry so much about me and the guy I live with has been so helpful to me and his 2 kids are just great. They text me almost everyday to see how I am. Sometimes with everything going on, I guess we forget just how lucky we are, some people have nobody. I have to remind myself of that alot. I get so wrapped in all the wrong things that happen & forget the good things. I must say I'm feeling better, still tired, but it's only been a week since the surgery, guess that's expected. Hope all is well with you & your family and I'm glad your husband is do better. Take Care
 
Hi Chris, the peg tube will become your friend no worries there. That being said, i'm not sure what kind of formula you are using. If it is Osmalite, Perative or something similar you will have to be very mindful of your flushing since these formulas basically turn into cement when they dry. So we had found the best way was to use a 60 ml syringe and push the feedings in slowly, then flush with another 60ml of warm water. Using a feed pump for feedings only led to the lines getting clogged. Over the course of three years we went through 4-5 pegs. Also we found the feed pump to be more useful running water in 24/7. Hope this is helpful to you.
 
Yes I am on Osmalite and we have been flushng with 60ml of water with each feeding. I am suppose to have 4 cans per day, but have not quite worked up to that yet, they told me to go slowly, so I'm trying to add more and more each day & also trying to add more water during the day, cause I think this stuff makes you thirsty. Thanks for the info, appreciate it
 
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