December 2011 Moms
KYmama9286
member
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-T-
KYmama9286
member
Hey- sorry! I dont come on the boards as often as I used to and I just saw your post! Nicholas has had his tube for a couple months now and we are currently doing continuous overnight feeds and a few bolus during the day. Are you on facebook? There is an awesome closed fb group for moms of kids with tubes that I have found REALLY helpful for all my random questions. If you send me a PM with your name I can add you as a friend then invite you to the group- there are tons of moms on there from all over the country and some have multiple tubies, some have kids that USED to be tubies but arent anymore, etc. What kind of pump and button does your LO have? Nicholas as an AMT-mini button and a zevex infinity pump (which we had quite a few problems with in the beginning). Things have gone pretty well for us with the exception of granulation tissue which is out.of.control. I cant seem to keep it away and it builds up really quickly and we even had them use silver nitrate to cauterize it off and it didnt help (almost made things worse actually). A few veteran moms told me that they used liquid maalox and it worked great so we are trying that now (taking a split guaze 2x2 pad, putting it around the button, taping it shut by only taping the guaze no skin taping then saturating the guaze in maalox or gaviscon or whatever...use up to 4x/daily for a few hours at a time). How are things going for you guys so far?
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Re: -T-
YGPM - I definitely want to see that fb group.
DS has a Enteralite Infinity pump and his button is Mini brand, I honestly don't know what it's called. It just got FDA approved in January. The surgeons were so proud of it. It looks like an x or +, whichever way you look at it. The G and J ports are across each other, and the water port and just an extra stablizer are across from each other. I wish we had one like yours - hopefully sooner rather than later we'll get there! Ours is so bulky and he grabs at it all the time! I haven't had any problems with his pump until last night. DS is continuous and I checked how much was still in the bag. It looked like about an hour's worth so I was going to let it drain as far as possible since I was going to hang a new bag, and have less waste that way. Well, I went back to check, and it was all air up until the extension! I don't know how that happened, but if it happens again, I will definitely ask for a new one.
What exactly does granulation look like? DS had quite a bit of redness around the area, but I paid super close attention and made sure I dried really good for a few days and it seemed to go away. I will definitely remember the Maalox though. Did that seem to work for you?