Feeding Tube Awareness Week might have ended yesterday but that doesn't mean we have to stop spreading awareness or knowledge. Feeding tubes are somewhat of an unknown to the majority of people. There are alot of missunderstandings and wrong information floating around out there and S4L wants to help fix that. Liam has been on a feeding tube for quiet some time now and has had 3 different types of tubes. Go ahead and ask any questions or state any concerns you have and we will be happy to answer. Comments are welcome. If you want to stay annonymous just email me at
shootingforliam@yahoo.com You can also post questions at
http://www.facebook.com/ShootingForLiam
Liam after Gtube and Nissin Fundo Surgery. October 2011
Here's some Questions we got on Liam's FB page:
Q: I have been following Liam's journey since my son was diagnosed with CDH inutero in Dec 2011. I have followed your ups and downs with Liam's feeding and am pretty worried we are gonne be on the same journey. We have a GJtube placed tomarrow at 9a instead of his Gtube. I would like any advice on how to care for a GJ that you could give me.
A: Feeding tubes can be over whelming at first. When Liam came out of surgery for a Gtube I was petrified to hold him because I thought Id hurt him. It took me weeks to realize I could hold him like a normal baby. And when it came time he did pull out the tube, he acted like nothing happened.
*As for care: keep the site cleam. Use a wet wash cloth to clean the area and keep it as dry as you can. Our medical supply CO provides us with split 2x2 guaze to use around the tube but I found that they don't work very well. They didn't soak up all the leaking fluid and the pad itself would be drenched in no time. The guaze had to be changed every few hours or they would just contribute to irritating the skin. I ordered a few Gtube pads a few weeks ago and within 2 days I saw a HUGE improvement. Check out Sew Amazing Creations. She makes really awesome tube pads at the cheapest price on the market. Only $1 per pad!
http://www.facebook.com/SewAmazingCreations
*The most imortant thing with a GJtube is that you do NOT want it to spin. If it spins the J port could back out of the intestines into the stomach defeating the purpose of the GJ. Again the best thing I found to keep this from happening is the Gtube pads.
*Keeping your child from pulling out tube is a challenge but it is possible. We used to think a onsie would prevent Liam from pulling out his tube but last August we learned how very wrong we were. He was able to pull it out right with no problem whatsoever. Tummy belts work really well because the child cannot grab ahold of the tube with their hands and yank on it. I have this problem with Liam. There are many places online where you can order these but they are costly. Decorative yes but I know I cant afford $20 to $40 for one. Cherubim has a inexpensive tummy belt that works really well. Its stretchy and has built in velcro that makes it super easy to get on your child. They run $8.
http://cherubim.storenvy.com You can also use an ace bandage. The extensions are another issue. We use POSEY's (those things the hospital uses to strap on your little ones Pulse Ox) to strap the extensions to Liam's leg. It requies two now that he's bigger. When he was shorter and skinnier we were able to use one and strap them to his ankle. Works like a charm. We also thread his enstensions through his pant legs so it hides them from him.
*Pump feeding and mobility are a daily issue when you have an active one like Liam who just cant sit still. We figured out that we can put the pump and bag into its portable backpack and strap it to his walker allowing him to roam the house at his pleasure. Allowing him to free roam and crawl around without getting too far away from the pump is an issue. We have to just watch him and keep him near the pump or follow him around with the pump. As he's getting older we've noticed that he somtimes listens when we tell him to stop as he's crawling too far away but he also loves to ignore people. The other thing we've notices that when he's getting too far away and it pulls the tube just slightly he feels it and stops himself from going further away. He knows he doesnt like the pain. I think that as they get older it gets easier on everyone.
Q: My son has had a Gtube since July. We have had nothing but problems with it since his 6 week post op appointment. It has leaked, his skin is being eaten. They want to put in a GJ in cause he's throwing up past his Nissin and is failure to thrive.
A: Thats how Liam is. His tube leaks all the time. The Gtube pads are the best thing Ive found. They are thick so they pull the tube taunt against the inside preventing fluid from leaking through. Thats something the guaze doesn't do. We've tried all kinds of creams the GI prescribed but the best thing was to keep it dry.
Q: What problems have you had with the GJtube?
A: The main issue is that for some reason his GJtube actually desinigrates. The ports pop out because of this and his J port line has gotten clogged many times. We're not sure if its Liam or the way these tubes are made. Theres nothing we can do to prevent the tube system from falling apart but we can prevent it from getting clogged. Once a week we have to use soda, we use Pepsi but you can use Coke, to clean the Jport. We use 6 to 8 mls of soda, inject it into the J extension then let it set for atleast 15 to 20 minutes. Then we can go back to using it as normal. These are orders via our GI. Because its such a small amount it won't hurt him. And Ive monitored him after and theres no hyperness are anything else we've noticed after the soda gets into his system.
Liam's first feeding tube was an NG tube in the NICU. Because of the Cpap machine they have to put it in through the mouth. The second time he got his NGtube was in September of 2011.
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