Following is an excerpt from the Book “Butterfly Child”.
The hand itself, thanks to my hellish efforts did heal up straight, but for a while there I thought it wouldn’t. As wonderful and caring the hand surgeon was, he just could not comprehend my paranoia in making sure the hand healed straight. The problems with the scar tissue that covered Nicky’s hand before the surgery were many. Scar tissue does not breathe and it has no oil glands, that’s why it looked so bad, it’s very dry and squams constantly. One other big problem with scar tissue is that it does not “grow” like normal skin, hence the fingers and/or toes get “trapped” into that skin impairing the normal development of the hand, and that is why the fingers get pulled back into the palm of the hand. The nurse that came to help me with Nicky’s hand for the first couple of months after the surgery showed me how to wrap Nicky’s hands, and we made sure the hand was really gooped up with Vaseline and Vaseline gauze, because she told me that was the only way to “stretch” scar tissue, moisture and pulling with the gauze.
It took a little over two months for the whole hand to be back to normal and I wrapped it nice and straight ever since. This surgery held up for 13 years for the most part thanks to the wrapping. Nicky’s hands web so easily that I know for a fact that if I were not bandaging each finger this way, his hands would be completely fused.
The nurse also brought me bandages, which was amazing for us. I would have loved for her to come and help me on a regular basis, but the insurance would not pay for her because they claimed I did not need help because “I knew” how to do it. They just didn’t get the point or they didn’t care. In the business of caring? What a laugh. While I was still washing and re-using bandages, I had some EB parents that I met over the internet send me their extras and, on a couple of occasions, parents of EB children that had passed away, would send me their entire stock, which was a lot. I don’t know how some parents got their insurance to pay for the bandages, but we were never that lucky. We tried every which way to convince them, sent them letters, pictures, always only to get another “denied” letter in the mail. That’s how we survived at the time, living on donated bandages, sadly some from EB patients that passed away.
More of Nicky’s story in the book… Thank you so much for your support!!
Love & Light,