Sent: Monday, June 1, 2015 2:30 AM
To: Geri Kelly
Subject: Help!! New baby with Simplex-subtype unkown
I am an EB mom of two angels with the JEB-H subtype of EB–helping out a family struggling to find a good bandage dressing routine for their 6 week old with Simplex–subtype unknown. Please give me the rundown on basic care for simplex, especially hands and feet, elbows and knees. They have a small amount of most of the standard supplies–I’m going to find out more tomorrow (when everybody’s not so exhausted!) about who they have for wound care supplies and insurance basics and what-not. You also may or may not have already been in touch with them–Baby’s name is _____, one of twins–other twin not affected. I can’t for the life of me remember their last name right now (prolly cuz it’s 2:30am and my brain is mush), but here’s the rundown: They have been using vaseline gauze with gauze wrapping over that and tubifast. This, in my mind anyway, isn’t really working–skin is soggy, sloughing, and macerated. Today I had them do Transfer with a different type of softer gauze over-wrap, and no gauze touching skin. We’ll see how it looks tomorrow. Hands and feet are kind of a disaster and in desperate need of clean-up, but today wasn’t the day–bandage change took 2 hours plus bath, lots of anxiety, and had another EB mom standing next to me with a lot of different ideas than I had who’s son died of rdeb last year–kinda messy!! Trying not to step on any toes, need advice ASAP. AND any free supplies/support you can give them–I don’t think I will be able to stay another day, so many apologies because I know you must be very busy, but my request is urgent. I’m sure you understand!
Thank you times a MILLION!
Also–PLEASE call me too–I left you a message Friday evening– phone xxx
Thank you thank you!