I just wanted to make a quick post about Nicky’s left hand and show a couple of pictures.
This is Nicky’s left hand. This particular photo shows quite clearly his four fingers and the ‘pinky’ is all, as we say, “webbed in”. The index, middle and ring finger are a bit curled, but they function well and he wants nothing done to them, they’ve been holding pretty much this position since the last surgery in 2002 thanks to the wrapping.
This second photo to the left shows his thumb, which is very ‘in’ the palm, preventing him to use his hand to pick up things or play videogames well, which is his motivation for doing the surgery to begin with.
Believe me when I tell you, this is HIS decision and not mine. I don’t particularly enjoy seeing him in more pain, but he has decided long ago that having his hand somewhat functional is vital and important to him and is worth the pain. This is his body and his life and all I am here to do is help him and care for him.
He’s going to have a surgery on August 20th at CHLA to fish out his pinky and release the thumb a little bit so he can grab things better. The last time he had a surgery on this particular hand was in 2002, 11 years ago, just before he started first grade. At that time his hand was in a shape that defies logic, to be quite honest, so it’s hard to explain, but it’s quite logic with RDEB. All his fingers, excluding his thumb, were in a permanent curled position. He could not do anything with his hand, save grab something, perhaps. He hated it. When he saw, at his kindergarten, how all his friends had normal hands, he insisted on a surgery to fix it. It’s hard to imagine that as he’s having another surgery now that he is going to be a senior in High School. Here is a photo of what his hand looked like back in 2002:
How do you describe this strange, translucent, thick, non-flexible skin that RDEBers end up with? All I can think of is giving adjectives. I was told long ago that RDEB wounds that heals without moisture end up like this. Somehow the wounds being deeper retain instruction on how to heal themselves properly if kept moist, but all the ‘instructions’ are lost if dried off, so this is what you end up with. Some ‘whatever’ skin. I don’t know if this is true for ALL RDEB patients, but I’ve found it to be true for Nicky. I know some RDEB patients fare better with air drying their wounds. Good for them. This is not Nicky’s case. While it does take longer for wounds to heal when kept moist, they do heal so much better…. SO MUCH BETTER!! I don’t know much, but I know my son’s skin, probably better than I know my own.
So, if you see me around the next month or so in person or on Facebook moping, hopeless and being in not too fantastic of a mood, now you know why. Surgery August 20th, bandage change Sept 3rd. I will try my best to keep my ‘Hopeful and Positive’ face up for Nicky though. He deserves nothing less for me.
Hugs and Blessings,