Wound Care

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:

  1. Cut all of the needed supplies
  2. Unwrap one extremity at a time and gently wash with water
  3. Slather petroleum dressings with vaseline or Aquaphor
  4. Put small pieces between finger/toes to prevent webbing
  5. Continue to wrap hands/feet up the wrist/ankle as far as needed
  6. Wrap each finger with the dressing (we don’t do this to the toes)
  7. Add a piece of Mepital (a thin foam pad) to the heels to prevent damage when Kiira kicks her feet
  8. Wrap hands/feet with stretch gauze
  9. Cover hands/feet with tubular bandage
  10. Cover hands with mittens
  11. 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.

3 Responses to Wound Care

  1. Heather Blakemore says:

    I just wanted to let you guys know that there can be light at the end of the tunnel. I worked at a pediatric respite facility in Nevada County for years and worked with 2 siblings with EB. I was the staff member responsible for wrapping their wounds every day. They were teenagers when I worked with them in that setting. I have recently gotten back in contact with the girl, with whom I made an immediate bond. She is now 19 and doing so well! She is living a full life with her family and her boyfriend. She is still living in Nevada County for now. I sent her your link in hopes that she will get in touch with you. I wish you courage, patience, and love in your journey. If you ever need anything, I hope that you feel that you can reach out to me. I have experience in the field and work for multiple respite providers. Regardless, I want you to know that you are in my thoughts and prayers… and there are people in your vicinity that understand your plight. Thank you for bringing awareness to this affliction.

    Love & Healing Thoughts,

  2. Malake Saidy says:

    Hope she will not feel any pain in her life and she lives a happy life and hope to find a cure for her and all that suffer from this disease.
    I will pray for her, best wishes and happy holidays….


  3. rebecca schutt says:

    Hi there,
    First of all Kira is such a dolly! she is so smiley and happy way to go mom and dad!
    I am a nurse that has worked with kids with EB. One mom I worked with had all of the dressings cut from a 100% cotton material that could be washed and reused if possible she found there was less friction with this than the gauze. Also all of the child’s clothes were lined in silk which seemed to help with the friction as well. Not sure if you had heard about doing that or not. Also we washed the wounds with normal saline and slathered them up with a coconut oil then Vaseline.
    Best Wishes for you and your family!


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