Blog · January 29, 2014

Under the Bandages

As many of you know, I don’t post photos of Nicky’s wounds on Facebook because they’ve been deleted many times because people “report’ them. I’ve been blocked and my account has even been suspended by my intent to simply show what EB is. People are disturbing and can be quite mean-to say the least. I don’t deal with that well. This is deeply, DEEPLY personal to me. My intent is not to shock or exploit, I would like nothing better to fade into obscurity and live my life as I like and see fit, but my child suffers daily and I can’t make it go away. My wish is to educate and spread the word that this is an awful condition and we need a cure, and we need it NOW.

OK, so for those that are new to Nicky and his struggles, he is now 17 years old and a senior in High School. He was diagnosed at birth with  the Recessive Dystrophic form of Epidermolysis Bullosa. If you are interested in finding out more about EB, or to donate for a cure, please visit the following websites:
EBMRF and dEBra of America (both links open in new windows).

IMG_2021skThis first photo shows Nicky in the evening how he is when we change bandages-we took off the bandages on his arm and we air-dry it a bit until it becomes too painful and then we re-wrap. Nicky usually either plays his DS or Candy Crush on my iPad or we watch something funny on TV, like “How I met your Mother” or some interesting stuff, such as the Ghost Hunters type of shows, he loves those and take his mind off the pain. He always smiles for me 🙂

OK, so these are the graphic photos I took last night. The second one in my view is a tad more disturbing than the first. Click on the pictures to reveal the bigger version. I specifically put a link back to my blog on each photo to reveal the origin in case the photos get taken and shared elsewhere.

IMG_2044skThe first one is a huge blister on his left leg that went all the way around. This that you see is only a third of the size as the rest is behind the leg and hanging behind. These are the kind of monsters he gets. We wish and hope we get to them while they are still small so they don’t grow, but, alas, the sooner they get popped the sooner they stop growing and the healing can start-the healing can take anywhere between a week and a few months. As you can tell from these two pictures, Nicky has various wounds in different stages of healing.

The second picture below is of his thigh also on his left leg. This area is extremely hard area to bandage-as he was able to take off the bandages and saw it he started to cry. He bows his head and just weeps. I take care of the wound and re-bandage, knowing full well tomorrow we’ll have to re-do it all over again on another part of the body. On this picture you can see what the bandages look like once I take them off, with the green yuckiness, tinted with blood. Part of the wound his healed, some is tinted with Pseudonomas. Anytime we see this green stuff we know that’s what it is… or, at least, that’s what we were told it is. We normally don’t use antibiotics per se to treat this, we prefer using anti-microbial products such as Xeroform. Not only it works for Nicky to get rid of it, the body does not build a resistance to it like it can with Antibiotics.

IMG_2052skEven with all of this, I can’t really say Nicky is getting worse per se. The downward spiral is there, but it’s very slow. He’s definitely doing worse than he was, say, 5 years ago, but he’s stable. He gets his nutrition through the g-tube, iron infusions to control his anemia and we check for infections and the big C constantly.

Attitude makes a big difference too. I try to make Nicky’s life as pleasant as possible, he goes to a Charter High School where he moves along at his pace, and he plays Minecraft or watches videos all day long. We go to CHLA for various things, such as the infusions, but also for Physical therapy, Hydrotherapy, Dentist etc. There are so many good things coming to the horizon as far as treatment, I am in the hope that by the time he turns 18 in late November he will be able to be part of the Stanford Clinical Trial which involves genetically modified skin grafts, which will 100% cure the portion of the skin wherever they are put.’

Thank you for your continuous support and for putting up with me and my ventings and rantings. I only do have my son’s best interest at heart.

Love and Light,