Guest guest Posted December 28, 2001 Report Share Posted December 28, 2001 Hey Group: Once again I turn to the experts. Now that is afraid of the TPN idea-she has resolved herself to having a stomach tube-any words of wisdom from the group? I think it will help her feel better. Thanks again, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2001 Report Share Posted December 29, 2001 has had his g-tube for about 3 years. He basically doesn't eat at all by mouth now (too much choking). When he first got the tube his tummy was a little red and sore. We had bandages that we changed out fairly often. After about 2-3 months we have never had to use those kind of bandages again. It kind of worked like the pierced earings I had. When it first was pierced I had to clean them with alchol or hydrogen peroxide. I put on an anti-biotic cream and rotated the earings. This is the same thing we did for 's tube. Now that the tube has been in for this while the only thing we do is wash off any dried bits. has the mic-key button which has a little ballon inside. He can tell when the ballon pops or when the ballon starts to leak out it's water. We replace the tube at home. It takes about 15 seconds to pull the old, clean the site, check the new and place the new (always check to make sure the ballon isn't already popped!). It always takes longer because I let him squirt me with the extra water. The mic-key button looks a lot like the air valve that is on a beach ball. It is very small and we have never had it catch on his clothes. You have to be sure to only use the creams that the doctors give around the tube since the tube can be damaged by some types of ointments. I don't want to say there is never any trouble with the button but it is worth it when you think of every bite heading down into your lungs!! We had on the nasal tube for about 1 year before giving in to the surgery. Good luck with yours. Twana > Hey Group: > Once again I turn to the experts. Now that is afraid of the TPN > idea-she has resolved herself to having a stomach tube-any words of wisdom > from the group? I think it will help her feel better. > Thanks again, > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2001 Report Share Posted December 29, 2001 Hi , We have been tube feeding Miranda since she was 13 months old and have had no major problem with it. She is now 5. I would think compared to TPN, its a peice of cake. After the initial tube is placed, you can get a low profile button that is very inconspicious. There are also great small feeding pumps that have sporty carry packs that people do not even know what they are. The Zevex pump is great. If there are any specific questions I can answer, please feel free to write! Tube Feedings Hey Group:Once again I turn to the experts. Now that is afraid of the TPNidea-she has resolved herself to having a stomach tube-any words of wisdomfrom the group? I think it will help her feel better.Thanks again,Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2001 Report Share Posted December 30, 2001 Hey all Cassie also has the mickey and we have been very pleased with it. I, too, change it at home, it hasn't really given me any trouble in the change out or use. We also had used the NG tube for a year just prior to the G tube, we were to unsure how she would do in surgery, so we chose to go the NG tube route first. I will never do that again if we can stay completely away from it. The NG tube stole Cassie'd feeling of safety/free from invasion in the home setting. I hated being the dreaded one with the NG tube, I also placed these. I have to tell myself that the NG tube saved her life because she was down to skin and bones. I knew she didn't have much time left if we didn't act soon. I'm thankful that the G tube is now in place because Cassie's health has continued to go down hill, she too is basicly doesn't eat at all by mouth because of the risk of choking. Applesauce is getting difficult to swallow as well--which she used to take her prilosec (I open up the Prilosec capsule over the applesauce and give it to her that way.) While I'm on the topic of Prilosec, has anyone been on or had their child on Prilosec and had to switch to a different choice because of swallowing issues? What did you go to and are you pleased with it? Cassie's GI specialist mention a drug that you place on the tongue and it is absorbed into the body immediately from the mouth--can't recall the name of it, has anyone used this drug by chance? Thanks a Bunch Re: Tube Feedings > has had his g-tube for about 3 years. He basically doesn't eat > at all by mouth now (too much choking). When he first got the tube > his tummy was a little red and sore. We had bandages that we changed > out fairly often. After about 2-3 months we have never had to use > those kind of bandages again. It kind of worked like the pierced > earings I had. When it first was pierced I had to clean them with > alchol or hydrogen peroxide. I put on an anti-biotic cream and > rotated the earings. This is the same thing we did for 's > tube. Now that the tube has been in for this while the only thing we > do is wash off any dried bits. has the mic-key button which > has a little ballon inside. He can tell when the ballon pops or when > the ballon starts to leak out it's water. We replace the tube at > home. It takes about 15 seconds to pull the old, clean the site, > check the new and place the new (always check to make sure the ballon > isn't already popped!). It always takes longer because I let him > squirt me with the extra water. The mic-key button looks a lot like > the air valve that is on a beach ball. It is very small and we have > never had it catch on his clothes. You have to be sure to only use > the creams that the doctors give around the tube since the tube can > be damaged by some types of ointments. I don't want to say there is > never any trouble with the button but it is worth it when you think > of every bite heading down into your lungs!! We had on the > nasal tube for about 1 year before giving in to the surgery. > Good luck with yours. > Twana > > > > Hey Group: > > Once again I turn to the experts. Now that is afraid of > the TPN > > idea-she has resolved herself to having a stomach tube-any words of > wisdom > > from the group? I think it will help her feel better. > > Thanks again, > > > > > > > Please contact mito-owner with any problems or questions. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2001 Report Share Posted December 30, 2001 My son Noah is getting a jejunal tube this Wed. I am interested in what formula you use with it, is it easier/harder than the G-tube, and do you still feed him orally at all?Also, Noah is on Prilosec, but they never mentioned combining the sodium bicarb for me. I open the Prilosec capsule, and mix the contents with about 5 cc's of sodium bicarb myself. But sometimes it still gets stuck in the tube. Any feedback or tips on the GJ tube would be very much appreciated! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2001 Report Share Posted December 30, 2001 We give my son omeprazole (prilosec) into his jejunal feeding tube. Our pharmacy at the Children's hospital came up with a way to bind it with bicarbonate - 2 mg of medicine in each cc of fluid. It only lasts a month and then goes bad but it is so easy to be able to just draw a liquid up. They have shared their recipe with all the local pharmacies and it is my understanding that almost all children's hospitals know how to do this. It's probably simple enough to do at home but if they are willing to open capsule after capsule and put it into solution for me I'm more than happy to let them. If your pharmacy can't get the recipe from your children's hospital ask them if they would be willing to get it from one of our pharmacists. I'm sure they'd happily explain it to a fellow pharmacist. Anne Re: Re: Tube Feedings Applesauce is getting > difficult to swallow as well--which she used to take her prilosec (I open up > the Prilosec capsule over the applesauce and give it to her that way.) > While I'm on the topic of Prilosec, has anyone been on or had their child on > Prilosec and had to switch to a different choice because of swallowing > issues? What did you go to and are you pleased with it? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2001 Report Share Posted December 31, 2001 Hi : I hope all goes well with the J tube. Will it be a G-J tube or a separate J tube? I don't have any experience with the G-J tubes. Both of my boys have two separate buttons. One for the G and one for the J. Both were done surgically at different times in their lives. The J tubes were placed with a technique called a Roux-n-y surgery and I feel this has been very good for long term use. With jejunal feeds the formula can only be dripped in continuously. Bolus feeds do not work because the jejunum is unlike the stomach and can not expand with added volume. Max rate per hour is individual and you may have to play around until you find what is comfortable for your child. We have had good success with my older son using neocate one plus formula though we do have it at 1/2 strength. This is a formula that is very broken down for him so he has little left to digest. Other children tolerate formulas that are not as expensive - even pediasure so that again is quite individual. Meds we push in slower than we did when they used to get meds in the G tube. We don't have to leave the tube clamped as long because the jejunum is unlike the stomach and is not a "holding tank" . My kids don't tolerate being clamped much longer than about 10 minutes per med. I do still give my children things orally. They have what is called 'sham feeds." They can eat things that are liquids or mushy such as pudding, jello, drinks, suckers, popsicles, etc. or even a cracker with a cup of milk. The food then goes into the stomach and comes out the G tube which is always left unclamped and connected to a small drainage bag. The reason for this is that their stomachs do not empty so if they were not always hooked to a drainage bag the food they ate would sit in the stomach and eventually they'd get obstructed. However, if your child's stomach still empties, even if a little bit, there is no reason to stop oral feeds. It is not contraindicated unless the doctor tells you that (as in risk of aspiration, etc). I think it is so important to continue to encourage oral eating for social, speech, muscular and liver protective reasons. Care of the stoma if surgically placed is the same as for a G tube. With the type of procedure my kids had done I can still replace the J tubes at home just as I can the G tubes. If your child has a G-J then only a radiologist can replace the tube so you'll have to be fairly careful to not let it get pulled out. Hope all goes well . As for the prilosec and you doing it yourself - they may not have even thought about offering it to you. Our pharmacists know us well and fortunately do whatever they can to lighten the load for us. I'd just ask then pharmacy if they would not mind doing it for you. Hopefully they will be willing to help. Anne Re: Re: Tube Feedings My son Noah is getting a jejunal tube this Wed. I am interested in what formula you use with it, is it easier/harder than the G-tube, and do you still feed him orally at all?Also, Noah is on Prilosec, but they never mentioned combining the sodium bicarb for me. I open the Prilosec capsule, and mix the contents with about 5 cc's of sodium bicarb myself. But sometimes it still gets stuck in the tube. Any feedback or tips on the GJ tube would be very much appreciated! Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
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