I thought some of you might be interested in knowing what our daily wound care process entails.
- Cut all of the needed supplies
- Unwrap one extremity at a time and gently wash with water
- Slather petroleum dressings with vaseline or Aquaphor
- Put small pieces between finger/toes to prevent webbing
- Continue to wrap hands/feet up the wrist/ankle as far as needed
- Wrap each finger with the dressing (we don’t do this to the toes)
- Add a piece of Mepital (a thin foam pad) to the heels to prevent damage when Kiira kicks her feet
- Wrap hands/feet with stretch gauze
- Cover hands/feet with tubular bandage
- Cover hands with mittens
- Slather Kiira’s other body parts in vaseline or Aquaphor
Jason does the feet and I do the hands. One of us keeps Kiira calm or feeds her and holds the hand or foot while the other does the wrapping. The process has been taking us about an hour once a day when she is cooperative. If she is fussy, it can take us nearly 2 hours. Kiira currently has no open wounds, so we’re just waiting for the old wounds to finish healing and preventing new ones from coming.
We follow this Stanford video approach for an EB baby: http://dermatology.stanford.edu/gsdc/eb_clinic/eb-videos.html.
If you prefer to read about it, we use this procedure: