I have been wanting to do a post (with pictures) on how we do dressing changes to give other EB families ideas for their own set up.
here is the area as a whole
gauze opened and tubifast pre-cut to size (keeps the gauze in place)
lancets to pop the blisters:(
ointment we use on his wounds
twice a month I spend time prepping 15 days worth of bandages. It saves SO much time each day. It takes me about 6-7 hours to open the packages cut the pieces, wash/dry/cut the Tubifast, and sort them into 15 sets of bandages. I store them in gallon size Ziploc bags to keep them safe and dry. It's also handy to have them ready to go in case he is admitted to the hospital or we have to leave quickly for some reason. Just grab the bags and go!
For those wondering how much we use each month: Right now we use 2 pieces of 6x8 transfer, 1/2 of a 8x20 transfer, 1/4 of an 8x20 lite, 1/2 of 8x8 mepilex, 1 6x6 mepilex, 1 6x6 lite, 1/4 of the restore lite foam, about 1-2 sheets of the 6x8 restore contact layer or mepitel, 3 ABD pads for protection only, green, blue, and yellow tiufast, 2 rolls of 4" gauze, 2 rolls of 3" gauze, and 1 roll of 2" gauze PER DAY so when you times it by 30 days it comes out to A LOT of bandages.
these are pictures of where we keep SOME of his supplies. It is the items we use daily, the rest are stored in the dinning room
For his bath time he is big enough to sit in the regular bath tub on a soft towel. I fill the tub with water up to his waist. Depend on how is skin looks I either add Vinegar, Chamomile Tea, baking soda or just regular baby bubble (he LOVES bubbles). I left him soak (with his bandages still on) for along as he wants too. Then I rinse him with a separate container of whatever is in his bath water so I don't spread the bacteria already in his bath water onto the rest of his body. If he was sitting in bubbles or baking soda I just rinse with clean water. Then I move him to the bandage table and change one limb at a time. 5 days a week I change his bandages by myself; and he itches SO much when his bandages are off that I can only change one limb at a time so he doesn't itch himself raw. I remove the old bandages. Pat dry with a towel or dry on low heat with a hair dryer (damp skin can breads bacteria and fungus). Then I apply any ointments I think he needs (it varies from day to day depending on how his skin looks). Then I re-wrap his limbs and torso. Most days he drinks his milk or has a piece of candy or plays with toys and corporates for the most part. But there are some days he screams and thrashes around the ENTIRE time:( Those days are not fun. He is what he looks like all wrapped up!
That is how we do bath and bandage changes here. Everyone has their own way of doing things and it all depends on the age and severity of their child. It does take awhile to find what works best for everyone but I wanted to give some examples to help other families figure out what might work for them!
*disclaimer-I am not a medical professional. I have lived with EB myself for 35 years and have been an EB mom for 10 years. These are things I have learned along the way and as well as input from other EB parents.