Guest guest Posted August 8, 2002 Report Share Posted August 8, 2002 , I'm so sorry to hear that your daughter is having comlications. Know that I am thinking of you and praying that things improve quickly. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2002 Report Share Posted August 8, 2002 my mom has a bunch of problems similar with her colostomy...she is on a list where they talk about these things...you might try an ostomy site for ideas...she said she doesn't have any...she has had this same problem for years but they have blamed a lot of it on her wieght...I am assuming that might not be an issue for you, but I wish I could help... deb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2002 Report Share Posted August 8, 2002 , I feel your pain. Hope today will get better for Miranda. Darlene Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2002 Report Share Posted August 8, 2002 Hang in there! I know how fustrating doctors can be especially when they have to correct something. Sue Ann I am so frusterated! Those of you who might remember, Miranda has been having issues with her Gtube stoma for some while now. She was in the hospital 8 days in May with an infection from leakage and such. At that point she was switched to a G-J tube for aspirations issues and the leakage greatly reduced because nothing was going into her tummy. When she was just in for the nissen and pyloroplasty redo, I had told the surgeon we were having many issues with it. So now we are back to G feeds and the problems with leaking are all back again. She saw the surgeon yesterday and the first thing he said when he saw it was, "Gee, I hope we don't have to do anything surgically with that"........AHHHHHHH! Why didnt he just take care of it when he had her in the OR then!!!??? So now the plan is to do very slow feeds to help reduce what formula leaks out. They gave me some cream and some powder too which make her scream when I have to put it on. They said the problem is that the site is always wet and now it has a fungal infection, which is disgusting! The skin all around it is also all burned from stomach acid leaking out. She is taking 20 MG of prilosec twice a day for the acid. When will this all end???????? Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2002 Report Share Posted August 8, 2002 , I'm so sorry you're dealing with so much. It's not enough to have to worry about our children being sick, but when we have to worry about infections because of these things it's even worse. I know just where you are. We dealt with all of these a few years ago, and even did the g/j tube which we found to be wonderful for our son Branden. It was the first time in his left that he thrived and the tube was WONDERFUL!! Now, for my questions for you. What type of a tube does she have? The reason I ask is because if she has a Mic-Key it sounds to me like maybe the balloon isn't inflated right. I know that when Branden's balloon has too little water in it we deal with the same thing. Once the fungal infection clears up I would suggest that you try mixing a cream called Aquaphore (it's made by the makers of Eucerin and you should be able to find it at pharmacies, Walmart's and probably most grocery stores) and mix it with Mylanta or something like that. We did this for a LONG time and it worked. I think it works a little better than just the antacid because it's thick. The Aquaphore is super thick and made with some sort of petroleum base or something (not really sure) and it stays even through drainage. We also used something called Duoderm which is a very thick material that you would cut and it would fit right around the tube. This would make it so anyone accesssing the tube wouldn't actually touch the stoma. We would use q-tips or something of the like to put creams or whatever it was on Branden's tube. There's just enough space to do this. The one we used was called DuoDerm Extra Thin. It's made by Convatec. You could ask your daughter's surgeon or even Pediatrician about it if you think it might help. Our surgeon gave us some and then we bought them, but we changed it once a week I think unless the stuff started coming up due to baths or whatever. Good luck. Please let me know if I can help in any other way. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2002 Report Share Posted August 8, 2002 , Miranda has had several diffrent tubes put in to try to help this. Presently she has a long tube ( not sure of tha actualy name) I know its made by Bard. She has had Mickey buttons and as I said the GJ tube. we are using some kind of powder and also several products made by Eucerine that the hospital gave up. I was also told to try some kind of Zinc Oxide cream like Desatin and see if that helps. I am using Qtips for the application of mediactions and cream to the site. Re: I am so frusterated! ,I'm so sorry you're dealing with so much. It's not enough to have to worry about our children being sick,but when we have to worry about infections because ofthese things it's even worse. I know just where youare. We dealt with all of these a few years ago, andeven did the g/j tube which we found to be wonderfulfor our son Branden. It was the first time in hisleft that he thrived and the tube was WONDERFUL!! Now, for my questions for you. What type of a tubedoes she have? The reason I ask is because if she hasa Mic-Key it sounds to me like maybe the balloon isn'tinflated right. I know that when Branden's balloonhas too little water in it we deal with the samething. Once the fungal infection clears up I wouldsuggest that you try mixing a cream called Aquaphore(it's made by the makers of Eucerin and you should beable to find it at pharmacies, Walmart's and probablymost grocery stores) and mix it with Mylanta orsomething like that. We did this for a LONG time andit worked. I think it works a little better than justthe antacid because it's thick. The Aquaphore issuper thick and made with some sort of petroleum baseor something (not really sure) and it stays eventhrough drainage. We also used something calledDuoderm which is a very thick material that you wouldcut and it would fit right around the tube. This would make it so anyone accesssing the tube wouldn'tactually touch the stoma. We would use q-tips orsomething of the like to put creams or whatever itwas on Branden's tube. There's just enough space todo this. The one we used was called DuoDerm ExtraThin. It's made by Convatec. You could ask yourdaughter's surgeon or even Pediatrician about it ifyou think it might help. Our surgeon gave us someand then we bought them, but we changed it once aweek I think unless the stuff started coming up due tobaths or whatever.Good luck. Please let me know if I can help in anyother way.__________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2002 Report Share Posted August 8, 2002 , We did have the bard tube as well for a while- I'm sure it's the same one you're referring to. We also had problems with it and that's when Branden started with the granulation. It sounds like you're doing about everything you could possibly be doing to help the situation. Good luck. I don't think there's anything else I can possibly tell you since you're doing so much already. Have you looked into the g-tube list at all? There might be someone there who could help out. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2002 Report Share Posted August 8, 2002 , I am not sure if you can do this, but I know that vinegar kills fungus. I wonder if the doctors would let you spray vinegar around the infected area. Even with fungus in the house, clorox cleans fungus but vinegar kills it. I have also had a yeast infection where I used a steriod cream. Just a thought. Darlene Quote Link to comment Share on other sites More sharing options...
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