Some of you might be interested in knowing what Kiira’s daily wound care process entails and the types of medical supplies your generous donations will help her parents cover:
- 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
While one person wraps, the other keeps Kiira calm or feeds her and holds the hand or foot while the other does the wrapping. The process has been taking them about an hour once a day when she is cooperative. If she is fussy, it can take them nearly 2 hours.
Your donations will help them purchase the extensive list of specific wound care supplies that are not covered by medical insurance and also in-home care to help with bandage changes. In the beginning, it required two people to change the bandages and it is still easier to have an extra set of hands. When we can, we have a family member or friends help, but being 7 days a week for 1-2 hours per day, it wears out the help quickly. At some point, it would be ideal to have a nurse to come in daily to help with the medical side of EB.
They follow this Stanford video approach for an EB baby:
If you prefer to read about it, they use this procedure:
Here is a slideshow of Kiira’s progress from birth to 7 weeks that really shows why following the proper wound care process is so important! Now that Kiira is older, our process has changed, but the images help if you have a newborn.