Having the right things and products to care for Gunner on a daily basis is crucial. We have to change bandages on Gunner every other day to prevent any type of infection that could invade his wounds or body. When we came home, we did not know how we were going to keep up with it all. Once we got a pretty big stock pile from the Debra Wound Care Clearinghouse, we were told about a company called National Rehab. They are truly EB family advocates!
National Rehab did all the "dirty work" with the insurance company getting all of Gunner's things covered. If the insurance denied any supplies, our representative Bill was sending them the papers right back and explaining the importance. Soon, everything was covered. Now every month Bill calls us, asks us what we need to tide us over for the month, an order is put in, and we get the supplies within two days! It comes in a HUGE box every time.
It is almost like unwrapping Christmas presents every month! :)
This has been such a weight lifted off our shoulders. All we have to do is keep track of what we need for the next order and let Bill know.
Some of the supplies that we use for Gunner are:
Adaptic - a contact layer that goes directly on his skin.
Mepilex Transfer - soaks up any drainage from a draining wound
Vaseline Gauze - protection and also acts as a lubricant (Vaseline and Aquaphor are our best friends :) So much so that Cody calls Gunner "Aqua-Man" because he is always covered in Aquaphor everywhere lol
Rolled Gauze - Holds all the bottom layers in place
Tubifast - Holds the rolled gauze in place and keeps it from slipping
We also use alcohol pads, 4x4 gauze pads, and sterile needles to lance Gunner's fluid or blood blisters. The only blisters we do not lance are ones in his mouth and ofcourse on his eye.
Gunner is bathed every other day with his bandage changes. He LOVES baths. I'm so thankful that bath time isn't another traumatic experiece for him. He is so rested and peaceful after a bath. We use regular Johnson and Johnson shampoo to bath him, and every other bandage change we use a little bleach water on his feet to kill any bacteria. (It is not that strong, so it doesn't burn him.) Bath and bandages first took us literally three hours in the NICU, but now we have it down to about a 45 minute job. We still don't know EVERYTHING about Gunner's woundcare, we learn more everyday. Everything with EB is trial and error, which is scary. But we are always up to date on the latest from all the help of our fellow EB families. :)