Feeding Tube Awareness Week

I was reminded by my blogging friend Rose-Marie at Adapting Creatively that this is Feeding Tube Awareness Week.  You can check out her post here.  Also see the Feeding Tube Awareness Website.

Some resources to think about include the free book for children from Mito Action (please donate to Mito Action a couple of dollars, they do great work for kids with Mitochondrial Disease). I have previously posted about g-tube feedings at school here.

Some ideas for awareness week might be:

• have your students in to speak about using a g-tube in a health class, scout troop or another setting
• do a lesson or series of lessons teaching your students communication and self-advocacy about their g-tube - practice communicating messages like, "my g-tube hurts", "I am feeling hungry.", "I feel full.", "My feeding pump has a problem.", and directions to instruct someone on giving a feeding or troubleshooting a feeding pump
• teach your students how a g-tube works, allow them to see and touch things like a mickey, extensions, gauze, cans of formula, bolus syringes, feeding pump backs
• have your students make posters or flyers for Feeding Tube Awareness Week
• have your students write or compose letters to people getting a tube for the first time

A while back I printed a list of g-tube friendly clothing and accessories.  Here is an update:

• AMT - G-tube accessory to clamp the connection closed
• Bundie Baby - includes g-tube onesies and wraps and a g-tube wearing stuffed animal 
• G2ube - cloth g-tube pads
• Logan's G-Tube Clothes - including special patches to make "Tummy Tunnels"
• My Button Buddies - cloth g-tube pads
• Snap-ez4life - cloth g-tube pads
• Special Clothes - will add  g-tube pockets to special clothes

G-Tube Clothes

This is a follow up to the blog entry Tube Feedings at School.

The following companies sell clothing for children and/or adults who use g-tubes for nutrition and/or hydration. You may want to share these sites with parents this upcoming school year.

• Easy Access
• Tummy Tunnels (iron on patches)
  
• Special Clothes Online
• Bundie Baby Medical Onesie
• Sew-G-It

One of my biggest pet peeves is undershirts under body jackets with no cutout for the g-tube in the undershirt. For this school year I have used those packets of iron on patches meant for worn out knees on pants (you can find them in the sewing notions section of discount stores and drug stores) and ironed them over the area where the g-tube if and then cut a hole (the patch is on the outside as to not be an irritant). This way if the student does not have on a shirt with a hole we can change to one when we put on the body jacket during the morning change. Nothing makes me crazier than a student who cannot fully participate because he or she cannot sit up straight because his or her body jacket has been removed for a feeding (and likely will not be put back on for some time if at all).

Tube Feedings at School

Many of our students in the intensive special needs classroom are feed by a g- or j-tube, either alone or in addition to oral feeding. In my first job (what feels like a thousand years ago) teachers and para-educators gave students g-tube feedings, the two schools I have worked at since then both have a nurse give the tube feedings. I have had students "graduate" from g-tubes while in my class (an exciting and scary time for families) and students start using a g-tube while in my class (also a scary time for families). Below I have created a list of links about g- and j-tubes.
Tube Feeding Information

• Tube Feeding Overview with Diagrams
• Mealtime Notions
• Tube Feeding Tips
• G-Tube Facts
  

Tube Feeding Organizations

• Kids with Tubes
• The Oley Foundation
• A.S.P.E.N.
  

Tube Feeding Products/Accessories

• Tummy Tunnel Iron On Patches (for access through clothing)
• Tube Connection Clamp
• Mobility Ball Feeding Pump Carrier
• Jackson Peg Tube Stand
• G-Tube Holder
  

G-Tube Accessible Clothing Companies

• Professional Fit Adaptive Clothing
  
• Easy Access Clothing
  
• Special Clothes