Welcome Raul!

Raul came to the clinic last night from Barlad Hospital. He is five months old, and has severe epidermolysis bullosa. The infections from the blisters on his feet are literally eating his feet away; he has some partial toes, and lots of infection. The smell of dying tissue is overwhelming, I will be putting some menthol on the inside of my mask this afternoon. His hands look like they have third degree burns due to the blisters. His torso seems to be clear of blisters right now, it is mosly his extremities that are infected (and his face had some little pimple-like blisters). Despite all this, he eats well, sleeps well, and is one of the happiest babies around. I had him smiling and laughing most of the morning! Due to the severity of his needs and chance of it being contagious, all other isolation children have been moved to another room. To enter his room you must wear a mask and gloves. His bottles get washed seperately from the other children, and we are only to blot his mouth with paper towels so that they can be thrown out in the hazardous waste bin (I assume the cloth diapers under and over him will be thrown away). He is here for hospice care; he had a twin that died of the same disease at one month old. I am not posting any graphic pictures of the wounds, but if anyone reading this has experience with this disease or advice on what we can do, I can send them more pictures of his hands and feet.