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Friday, February 11, 2011

Questions - A Better Response to Those Who Asked and Those Who Wanted to.

Yesterday on Day 5 of Feeding Tube Awareness Week the topic was reaching out to friends and family.  Letting them ask you the questions they have about feeding tubes.  Well I posted of Facebook and some did ask and the questions were great.  They mainly focused on how does the tube stay in, what happens if it comes out and how long will she have it.  I hope to better answer those questions today.

The type of tube that Noami has right now is a MIC-KEY button, made by Kimberly Clark.  This is what it looks like in her without her button buddy
 There are two pictures: the one of the left just to show you how it looks and the one on the right to emphasize that there are two ports. One that faces out to feed into and one that faces to the side that is attached to a balloon in Naomi's stomach.  The balloon is inflated with water and that is what holds her button in place.  The bottom right picture I found online and this is what her button looks like. 

Her button can actually be changed out at home and should be changed every three months.  We have yet to change it at home as the changes have coincided with appointments with her gastroenterologist but we are feeling braver by the moment and are going to try the next button change at home.  We'll do it in the morning on a weekday though, that way if anything goes wrong we can whisk her off to the GI doctor and save ourselves an ER visit.  The video I've included is another tubie mom and her daughter Harmony.  Laura is quite confident changing Harmony's button and I hope to be the same someday.

Now can Naomi's button come out? Yep.  Has it? Nope.  And we are very thankful for that.  If it were to come out and we had a spare button we'd pop the spare in and be doing good.  But we can't always have a spare as the buttons are expensive and insurance companies don't like to pay any more than they have to so, if we don't have a spare button or the button came out at night and we were unaware until later we have a supply of catheters in a range of widths that we can put into Naomi's stoma (the hole in her abdomen) to keep the placement while we head to the Children's Hospital as they are the only ones likely to have a button in stock.  The hole in Naomi's stomach could close in as little as an hour and definitely would within four hours so if the tube comes out timing is everything as we certainly wouldn't want surgery again.

A lot of you have asked questions about feeding therapy too, what do we do there, does it accomplish anything?  I plan to answer those soon along with pictures of a session but I need to either have Naomi do a session by herself or get the permission of Naomi's therapymate before taking and posting pictures.

Today's topic for Feeding Tube Awareness week is to tell about a negative and how it could have been positive but frankly I don't have much negative to report.  Thankfully our friends and family have been supportive and willing to work with Naomi and any limitations she may have with her celiac and her feeding tube and we are very grateful for that.

1 comment:

  1. Hi there! My 3 year old has a feeding tube also, for delayed gastric emptying and FTT. I'm so glad to see you participating in Feeding Tube Awareness week!