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Friday, October 7, 2011

Dressing Changes- part two

For those who missed part one, you can find it here

Part two: I wanted to focus on somethings we have changed recent in regards to Joey's bath and bandages that others may find helpful, so i wanted to share.

Bath time has almost always been a crying/screaming time for Joey.  In the beginning we alternated bleach/vinegar/plain water baths.  Mostly to keep the infections at bay.  Once we noticed little to no infected areas we cut back on the bleach and vinegar baths.  But even with plain water he still screamed.  So we started using something that I use to use as a kid when I took baths, baking soda.  I use 1/4 cup in his baby bath tub (it holds about 1 gallon of water) and guess what?  he no longer screams the entire time!!  Most days he just sits there fairly calm.  If he kicks too much and hit his foot he will start crying but for the most part he is clam.  We have been doing the baking soda baths for almost 2 months now and it seems to be working.  It seems to help loosen the dead skin and make his skin softer too.

Joey has/had A LOT of dry/dead skin/scabs all over his body.  And they are VERY hard to remove from a wiggly baby.  We can't let him soak in the tub for more than 5 minutes because with the our form of EB, the longer the skin is wet the more is breaks down.  When it gets too moist the skin just SLIDES off his body (seriously).  We run into this problem if we apply too much ointment to his bandages too.  So getting the dead skin off is a challenge.  Then I remembered something another EB family told me they did with their daughter (for a different reason) but I thought it might work for our situation.   I cut a piece of tubifast for each arm and SOAK it in Aquaphor until its all nice and greasy.  Then I put one on each arm, lightly wrap with gauze and then another piece of tubifast on top to hold it in place.  I left it on for 24 hours and when I removed it the next day about 50% of the dead skin/scabs came off with easy as I removed the tubifast!!!  IT WAS AMAZING!!!!  I tried it again for another couple of days and was able to get about 95% of the dead/skin scabs off  his arms. 

I have since tired it on both legs and was able to remove about 50% of the dead skin/scabs from there too but his legs are still really fragile that its not something I can do all the time.  He needs all the padding from the bandages to protect his legs.    But overall I consider that experiment a success:) 

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