Blog · April 30, 2013

If I Knew Then What I Know Now…

I was changing Nicky’s gauze last night, once again being amazed of how much certain types of gauze helps or protects Nicky’s skin and I wished the myself of today could not only advise the me of 16 years ago, but actually hand over the supplies to do it. If I could, Nicky would for certain be better off today. No doubt about it.

I can’t even begin to describe the horrible shape I was in when Nicky was born. I am writing about it in my book and I shake my head in disbelief. The various Insurance companies refused to cover bandages for over a decade. The bandages themselves were… sad. All we had to work with was Vaseline Gauze and rolled gauze. Wounds would get ‘stuck’ all the time. I washed and reused rolled gauze and survived with gauze donated to me by either other parents or from patients who had passed. We hated Telfa, it macerated the wounds, everyone sent us those for some reason. There was no kind of gauze like Mepilex that absorbed the wound’s yuckiness and kept the wound clean. I used coban to keep stuff in place, my choices were so limited, I cringe thinking about it.

IMG_0023 (4)f_sHere’s my little sweetie when he was 2.5 years old. I got him as undressed as I possibly could so we could go play in the pool. Just the fact that I wasn’t wrapping his hands on a regular basis because I simply did not have the gauze to do it, or that I loosely wrapped around his knee and not the other because, once again, I did not have enough gauze, just makes me realize how much damage I could have avoided. But I had no choice. No choice. Wound care supplies were so exorbitantly expensive I already had had a bankruptcy because of them and now, with no credit and living with donated supplies, I was always afraid of running out. It’s not a good feeling.

I can only speak for Nicky, because that’s all I know, but once areas get damaged ONCE and they heal without moisture or not good somehow, they become scarred and scar tissue is weak skin which will re-blister that much easier. Eventually, as each new wound goes through the cycle of healing, it takes longer and longer to heal and then it does not heal at all. That’s why Nicky today has wounds that take FOREVER to heal, and some never do.
Oh… what I would do to get that Delorean and visit my older self a few times a year to give myself supplies and tips. Sigh.

Of course, it’s fruitless to make these kinds of wishes. I can only say that I am proud of myself to have been able to take care of Nicky as well as I possibly could with the little knowledge and few resources I had.

IMG_9440f_sBefore I close this post (I promise my next post will be ‘happier’!) I wanted to share this image of Nicky’s left foot I took just the other day.  The ‘white’ raised spot you see is actually a blood blister that appeared below some really heavy scar tissue. It was difficult to poke and even harder to make sure all the fluid was gone because of the thickness of the skin above.  Not poking a blister with EB causes it to make a bigger and bigger wound. Those unfamiliar with EB may be a little taken aback with the appearance of his toes. When Nicky was little I used to put 1″ gauze in between his toes to prevent them from webbing. It wasn’t until Nicky was 6 or 7 and told me to stop doing that, and that he didn’t care about his toes webbing that I stopped. He’s the boss. Since then there has been quite a bit of webbing going on, the big toe and the toe next to it are fused and the other toes are basically webbed to the bottom of the foot. Nicky laughs and tells me he could not care less.

I must say, Nicky amazes me every day. His attitude about all of this blows my mind. Yes, he LOVES his pain meds, yes, he *HATES* EB (as controversial as it is to say this nowadays), yes, there are times he wants it all gone so he could live a normal life, at the same time for the most part he takes it all in stride. He’s a very loving, caring teenager that tells me he loves me a dozen times a day, who hasn’t cursed in I don’t know how long, who is more sweet than sugar, who is content very easily, and takes life one day at a time.

I Heart Nicky!