Thursday, December 27, 2012

Tubie Tidbits

For those of you who are interested in a little more information about feeding tubes, I thought I would share a few things that I've found to be very helpful.

Once Silas' feeding tube surgery was scheduled, we stumbled across Tubie Friends.  They sew feeding tube buttons into Build-A-Bear stuffed animals and make them available for kids with feeding tubes.

We contacted them before Silas' surgery, and they rushed our order so he could get it as soon as possible.  It arrived the day of his surgery.

It was nice for him to have a stuffed animal with a "button" like his that he could play with and get used to.  (He liked learning how the different tubes and extensions hook and unhook.)  We named ours Fudge.  We took Fudge to school, and the school counselor used him to tell the other kids in Silas' class about his feeding tube.

You'll notice that Fudge has a piece of cloth around his button.  We eventually bought Silas something like this from Button Buddies.  Feeding tubes can "leak" throughout the day.  Some people prefer to leave it open to the air.  We tried this, but the leakage was irritating Silas' skin. It was also making his granulation tissue worse.  (Granulation tissue is a red, fleshy tissue that often develops around feeding tube incisions.)  At first, we tried using gauze, but the strings would often stick to him and become very difficult (and painful) to get off.  The Button Buddies have been wonderful!

Another great resource that I found was the Feeding Tube Awareness Foundation.  (That's their logo at the beginning of the post.)  Here are a few of their pages that you might find helpful:

Different Types of Feeding Tubes - Silas had a NG tube over the summer and then transitioned to a G-tube button.

Products - I just love their logo.  I'm planning to buy something from their store soon.

Note:  You can click on any of the highlighted words above to follow the links.


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