How to Make an EB-Friendly Trach Collar

This posting is for the Roth family and their baby boy, Tripp.  Little Tripp has JEB, just like Leah.  And just like Leah, he had to have a trach placed at 5 months old. 

Here are their pages:

Caring Bridge

Courtneys Blogspot

The biggest hurdle with having a trach and EB is keeping the neck wound-free and clean ...... the collar can be a big problem. 

Now, this is just how we do it - I ain't saying it's perfect, or the 'right way' for everyone - but it's the least I can do right now to try to help them out.

Tripps trach probably won't be changed for awhile so hopefully this will give Tripps parents the chance to try to get a nice soft, padded collar ready for him.  Then again, they may already have done this, or know to do this; so this may all be moot - but when Jeff and I did this at the hospital, the staff acted like we had just split the atom.  Plus it's good for other EB families that may need to make a trach collar someday. 

So ............

you'll need the collar (obviously), some cloth tape, and a piece of PolyMem Silver, or Mepilex (Lite, Transfer, whatever).  We use PolyMem because it's softer and more absorbant than anything else - but it might be good to use this early on for Tripp to help heal whatever wounds may come up under his collar now. 

This is what it looks like, National Rehab carries it:

(Courtney: if you'd like/need; email me and I can mail some out to you)

It'll be hard to pre-size his collar without an old one to go by, but a guesstimate will work .... pre-size it and cut the excess piece off (just how the directions on the collars package say to do it):

Take a piece of cloth tape (it works the best for us) and roll it longways to create a double-sided piece and put it on the collar like so:

Take your piece of PolyMem and attach it to the tape so that a small amount of the pad sticks out beyond the edge to ensure the edge of the collar doesn't rub/chaff/irrirate the skin, then cut the pad to size, again making sure a small bit sticks out from the other side:

Repeat the process with smaller pieces of tape and smaller pieces of the padding for the ends.  Leave a teeny tiny space in between the pieces, it'll help the collar to not get bunched up when it's on his neck.  Roun the edges of the two ends, and your collar is complete:

Of course you could use 1 big piece of Transfer, or 2 equal sized pieces of whatever kind of padding you want.  We do it this way after trial and error with other methods.  This way works for us because we can coat the 2 end pieces in Nystatin powder, and those pieces sit right to the sides of Leahs trach and help absorb drool and keep the moisture level down. 

So there ya have it: how to keep an EB babies trach collar area nice and safe.  With this method we have never had any type of wound on Leah's collar area. 

And of course, Leah wants to say something to Tripp:

Hang in there buddy!! P.S. I think you're cute ; )