The Importance of Bandaging
In late October 2008 something happened that brought back a flood of memories of the reason why I bandaged Nicky so much and why I believed that this had made such a huge difference in his life. I took Nicky to hydrotherapy at CHLA and there were four nurses that told me that Nicky was their 3rd or 4th EB child they did that week. They were going to take off all his bandages, give him a bath, take pictures, assess him, call the Doctor so he could have a look over, and then re-bandage him. I was happy if only because I didn’t have to do it for once and I was always open to suggestions. After all, even though I do consider myself an expert in my child’s EB, I am no nurse. I told them to bandage him like they wanted to and felt appropriate.
Right off the bat there was a consensus that I over-bandaged him. I know, shocking. They conveyed me that the wounds needed to breathe to heal better etcetera. I tried to explain how the only reason Nicky was getting wounds nowadays was from scratching and by over bandaging I kept new wounds to an absolute minimum and allowed old wounds to heal without being constantly irritated by him rubbing them. Since I could see that it all went on deaf ears, I let them do what they felt was best, which was fine. I did love the nurses and had a great conversation with them.
The nitty-gritty came about when I had to change Nicky’s bandages a couple of days later. Nicky had more new blisters after that particular bandage change than I had seen in years. For example, he had brand new rather large blisters on his forearms, some nasty blood blisters on both his feet and he had a gigantic blister on his leg (between the knee and the ankle). That part of his leg hadn’t had a blister in four years. The reason was simple: that leg, and everywhere else he got new blisters, were barely bandaged (a roll of thin gauze was simply rolled over some Vaseline gauze) and that wasn’t enough to keep Nicky from hurting himself from itching.
That incidence proved me I was right: Nicky needed padding, period. Not only so he wouldn’t hurt himself to begin with, but to allow the existing wounds to heal.
At the bandage change after the hydrotherapy Nicky looked at me and told me… “Mom, just bandage me as usual please”. He knew what was good for him, and frankly, I would not put myself or him through this if I didn’t think it was beneficial. Our usual was covering the area with a layer of webril (for softness) topped with a roll of Kerlix. This is on top, of course, of either Vaseline gauze, Xeroform and Mepilex depending on the kind of wound he had. We also learned the hard way that wrapping way too much had the contrasting effect. When I padded Nicky’s feet too much, his little foot would swish around inside the cocoon, causing blisters. This whole bandaging was a carefully strategized ordeal.
There was so little with Nicky’s EB that was within our control, and preserving “good skin” to prevent infection and possibly skin cancer was of outmost importance to us. RDEB is a progressive disease after all, the areas that are wounded are more susceptible to get wounds again, which then take longer to heal.
In the past several years it seemed as if Nicky started belonging more to EB and less to us, and less to himself or what he might have been, and it was becoming increasingly hard to accept. He could do less and less as his wounds got bigger and bigger. It was heartbreaking. Our attitude towards wounds changed as well. We knew that the cancer Nicky could get would get started in wounds, hence our concern in getting the wounds closed and his skin protected so he would not get wounds in the first place grew even more. I found it interesting how when he was small I would fight so much to get a wound to heal with “perfect” looking skin, I didn’t like scars at all, and now the fact that Nicky had scars everywhere did not even bother me anymore, I just wanted those wounds healed in the best way possible.