Thursday, October 28, 2010

Day 4Photobucket

I think that to raise awareness for EB you should post a detailed step by step bath/dressing change with photos post!

OK.. here it is (but probably not as graphic or detailed as some of you wanted:)  I've gone back and forth with the idea of putting his little bottom area on here for you to see... but I just can't make myself.  For one, I might get arrested... and two, pictures don't even really do it justice.  It's that raw.  But, just so you know... this is a big thing for me to put "our life" online for people to see.  So I very nicely ask you to be respectful in not sharing these pictures.  And I realize that there are many different ways that EB parents do dressing change, so if you have any comments about how I do things, or suggestions about anything, please e-mail me personally.  Thank you :)

So... I start by cleaning every surface area that will be used and the tub with my very handy "Cavi" wipes that I so graciously "take" from the hospital :) We pay for them somehow, don't worry. 
 But they kill just about everything.  Love them :)

I use Mepilex and Mepilex Transfer... here are the differences:
This is the Transfer.  It's thinner than the regular Mepilex, and is porous... so it absorbs drainage much better.  However, it doesn't give as much "padding" than the thicker Mepilex, so I use it in layers. 
Here it is below- I use 6 of these 8x20 sheets.

The Transfer.

Here are the 6 sheets of Transfer after I cut them into the shapes and sizes I need. 

This is the Mepilex.  It's thicker and I use it over the wounds that are really raw (like his ankle, calf, thighs), or in the spots that we pick him up the most, like under his arms and both sides of his torso. 
And also around his feeding tube site. 

Mepilex pieces cut to size. 

Thickness of the Mepilex.

This is how many pieces I use for each body part.

Ointments, creams, cleansers, wipes, blister-popping scissors, etc...

Here are the roll gauze and the tubifast that I use.  There are 4- 4 inch gauze and 6- 3 inch.  I use once 4 inch and one 3 inch on each leg, and a 3 inch weaved around his legs/lower torso.  I use two 4 inch around his torso.  A 3 inch for each arm.  And a 3 inch weaved around his arms and upper torso.
Then there is a piece of tubifast for each leg, one for his torso, and one that I cut to make into a "shirt" that goes over his head and onto his arms.

Set up and ready to go.

I cover all of the Transfer pieces in Alwyn cream.  I like to think it does something, but I just don't know.  I like it because it makes him smell a little better and it makes the transfer pieces come off a little easier during bath.  

Bath set up.
I make a saline solution out of his bath water.  Then in a seperate container, rotate bleach baths and vinegar baths each bath.  Bleach kills staph and strept.  And vinegar kills pseudomonas.  
I use either Dove or Cetaphil soap, mostly for his head. 

Undressing the little messy man.
I'm skipping showing you the bath part... it's not pretty.

I want to give a huge "shout out" to Elmo. 
Without you, Elmo... bath would be impossible:)

After he gets out of the tub, I pat him dry and clean up some of his bad spots before I start putting the dressings back on. 

Every inch of skin has to be lubed with something.  Over his wounds I mix Desitin, polysporin, and aquaphor (as of now... this mix changes often).  Then on the remaining skin with no sores, just aquaphor.  Then I cover it with the Transfer and Mepilex, wrap it in the roll gauze and slide on the tubifast (like a stockinette) to keep everything in place. 

After doing each leg, I weave a roll gauze around his thighs and lower torso to hold things in place a little better. 

For the 6 weeks he was sick, he wouldn't even sit up for this part... but yesterday he was a good boy:)
The morphine helps, I'm just saying.

I love this face.

After wrapping both arms, I do the same "figure 8" thingy around his shoulders and upper torso. 
This also helps keep all the dressings in place. 

This is the piece of tubifast that I cut into a "shirt" and slip over his head and onto his arms so that it holds everything in place. 

He's so good for this.  If he's got a toy in his hand, he will switch it for each arm:)

Then I put a stockinette over his torso as well.  Then cut a little hole for his feeding tube.

Not over yet... time for trach change (not yesterday- but usually once every 1-2 weeks) and dressing/collar change.  He's not so cooperative with this part.  There are sores all around his neck so I'm sure it's painful.  He is constantly pulling these dressings out, so it just makes it worse :(

The finished little Hunk! 

I hope this gave you somewhat of an idea.  Like I said, I wish I could show you everything...  but I just can't make myself do it.  This process usually takes a least 2 hours and we do it every other day.  

I also want to thank my wonderful Mother- who is my bath buddy :) 
We have an awesome routine and have been doing this together since day one.  I don't even have to tell her what I'm thinking... we just read each other's minds:) Great minds think alike, you know? 



  1. This is amazing Courtney! Thank you for sharing - brought back a lot of memories for when my daughter - who is now 8 - was a baby!! Wow!!XOXO

  2. Oh Courtney.

    Thank you. My heart has sunken. I just want to pray and pray. Please God take the horrible disease out of this world! PLEASE

  3. Thank you for sharing this with us. God bless you and your husband and precious Tripp.

  4. don't feel bad for not posting what you don't feel comfortable with...i can't imagine anyone blames you for that! if they do, that's their problem!

    i truly admire your dedication to tripp's health. and i know you say you aren't super woman, but i think you are. when i am having my mommy meltdowns over something stupid, i think of you and all you endure and then get my act together.

    big ((hugs)) to you!

  5. wow I can not believe how long it takes, thank you for sharing this. You are super mom for sure :)

  6. Tripp is a trooper. I wish he didn't have to wear all that all the time and just run naked! He is an adorable little boy and his personality really shines through!

  7. I have followed Jonah and Tripp since Jonah's birth and reading these things isn't the same as "seeing" it. Thank you for taking the time to photograph an already time-consuming process! It really was informative. We pray for Tripp each night and for you as a family...

    The Maier's

  8. AMAZING Courtney! We don´t wrap Elly that much but the bath are bad, and her skin looks a lot like Trips. You don´t have to show the buttom I know how it looks like and it´s just to much=( I can´t belive this kids are so strong and for you to deal with the trac and the G-tube..KEEP up the good work, you are AMAZING!

  9. thanks for posting this and giving us a better idea of all you do to help Tripp. Your Mom sounds like a wonderful helpful Grandmother and Mother. I love how Tripp's personality shows so much in your last photo. He seems like such an awesome little boy who knows how much he is loved!

  10. All I can say is "Holy Cow! What a production!"

  11. Thamk you so much for taking the time to photograph an already long process! It has really again, opened my eyes as to what you have to go through to keep your little guy covered. Another question: Do you have websites you go to to buy his diaper covers? Do you have to buy special clothing as well or is he so well covered that the seams won't bother him! Thank you again!!

  12. I have followed the EB family blogs since i stumbled onto Jonah's site at his birth. I thought I could imagine what the dressing change must be like. I had no idea. I am even more impressed now with the kids and the parents of these precious children go through.
    I still feel like you are heros--all of you are. Thank you for shareing these photos--I wish there was something I could do. I wish there was some way to minister to you.... for now I will just pray....and i promise not to start stalking you :-)

  13. Courtney, I have never posted before but just wanted to say how AMAZING you are!! I admire you so much for standing by Tripp and dedicating your life to him! He is truly a miracle and such an inspiration to me and Im sure many other people:) Thanks for sharing your story!

  14. Bless your heart. I don't know how you do it. It's heartbreaking what y'all have to go through. I really appreciate you taking the time to provide the education.

  15. I will NEVER complain about my kids' bath time again! Thank you for putting things in perspective. No need to feel bad for not showing everything. Your post really is informative as is. I love Tripp's expression in the last photo. What a gift that your mom can work with you on these baths! Keep up the good work.

  16. such a patient and loving little man, and wow your such a great mama

  17. Thank you for sharing this with us. It really helps me to understand just how much you have to do to keep him as well as he can be. Blessings.

  18. I just love that last picture of baby Tripp- he is too adorable!! It seems like you really have a set routine going and you've discovered a good way to do his dressings. How did you end up getting the process to the point it is at today? Was it by trial and error to see what works, or did you get some guidance from other EB parents? Hoping you can post videos of Tripp soon- love seeing his "muscles" and "who's a rotten boy??"!! :)

    - Jessica W. Poole

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  20. Bless that sweet, beautiful baby boy! Thank you for sharing. :)

  21. After I viewed this the first time, I didn't comment. I was in a hurry and didn't have time to compose my thoughts. I noticed last night Jason was reading the blog when he got home. I pointed out to him tonight that you had updated it with more information today. At first he just scrolled down looking at the pictures and not reading the information (he isn't much of a reader), so he started asking me questions. I in my "non sarcastic" way, lol, pointed out all the information you posted above each set of pics. Then he said, go back to the top and read it all to me. So I did. Since I had already read the information, I was able to take more time to look at the pictures, which I didn't do before. One thing kept sticking out in most of the pics where I could see a glimpse of his legs and tummy. His upper thigh in one of the pics is so "beautiful". While I know he has that sore by his feeding tube and some others on his tummy, I just kept seeing them as being "clean" blisters. Every other area of his tummy looked so clear of blisters. This is a reflection of the EXCELLENT care he receives at home. Don't get me wrong, it does literally hurt me in my chest to see some of the pictures. I HATE to see him suffer. I thank you though for having the courage to post the images you did. I commend you for being brave enough to do it. I want to know more about EB and images speak so much louder than the words we read sometimes. Thanks again for the incredible care you give your little man. May God continue to give you the strength you need to take care of Tripp. You are such an incredible advocate for him. Don't stop doing what you do so well..... Protecting Tripp

    Love, Peace, and Prayers,

  22. Oh goodness I just want to cry reading all that! I am so sad for Tripp for having to live like that and the pain that he is in and you ..I can't imagine the pain you feel for him! I am so so sorry that he has this awful disease! I so wish there was a cure! :( You are an amazing mom!!!!

  23. It is just so unfair - I can't even begin to comprehend the emotion of all of this for you and your family. I can't even handle the pictures!!! That beautiful precious little boy - I am just so very sorry!!!!! I will continue to storm HEAVEN with prayer for Tripp and your family!!! GOD BLESS ALL OF YOU!!!!!

  24. Courtney,
    Thanks for doing an amazing job so far this week on sharing your EB knowledge with us. You had every right to decide what to share about Tripp's bath and dressing changes. You are truly blessed to have such a wonderful Mom to help you with his care. The last picture just touched my heart. The "little knight" is one tough beautiful child who is loved by so many people.

  25. you are tripps angel on earth-bless his heart and yours! prayers and hugs!

  26. Amazing. I don't know how you do it all, Courtney. And I so admire your organization! We've been in and out of the hospital for the last year with our daughter (congenital heart defect), and most ICU's aren't as organized as you!

    May God continue to give you strength to deal with each new situation, and peace in the midst of the storms.


  27. Wow, wow, wow, wow, wow. That really is a production. The spot around Tripps g-tube...I cringed when I saw it. OUCH

    I am so thankful for your mom...what a great lady to step up like that. Bless her (and Elmo too ;))

    I caught up on yesterdays post. Bmt...insert me exhaling here. I went on that "ride" with Daylon and I ride it with Elle. I cant imagine making that decision. I do pray that they find a better way...quickly...for Tripp, Jonah and other EB babies.

    Always remember you are one strong lady and one amazing mommy. Tripp is so lucky to have you...just as lucky as you are to have him.

    Denise WI

  28. WOW and AMAZING are the two words that come to my mind. I cried as I read this post, the dedication you and grandma have to making those sweet cheeks (and every other body part) as comfy and safe as possible is simply amazing. That last picture of the Tripp is just perfect, after bath and with sores he's still a smiling perfect little boy, WOW! He is loved and he is perfect!

    Keep up the great work Courtney, thanks for sharing!

    Rebecca in CA

  29. Hi, I have been following Tripp intermittently from MN. My baby is junctional also and I am trying to do something each day for EB awareness week. Your step by step is very informative and not too graphic. You asked to not share the photos but I was wondering if I could put the link to your blog on this dressing change on our post tomorrow for EB awareness? You are doing a beautiful job with Tripp! Sincerely, Becky Pop, Elle's Mama

  30. Courtney,
    thank you so much for this post. I really think that to really appreciate an EB babies life and their parents life, you need to see a bandage change. I'mso glad you did this for all the EB kids out there!
    You're such a great mommy!

  31. Thank you so much for all the detailed look of what you have to do. So much work but all to keep your Tripp safe and You my dear and your mom are truly admired angels taking care of an angel. It makes me feel happy that Tripp is so well taking care of, yet sad that he has to go thru so much. Keep up the great work mom and grandma!

  32. Hi Courtney: Thanks so much for all you have done this week for EB awareness. This posting of a dressing change is remarkable. These EB children are so so special, but wow what the parents go through, Holy Cow!!!
    Give that special son of yours a big hug and kiss for me. Love you guys. Tell your Mom I said hello and God Bless Her for all the help with Tripp. Love and Peace Leah's Nana

  33. What an ordeal to go through everyday! Bless his little heart! Hey... we have access to "borrow" too! Email me and we could send some to you!! I think it's brillant how organized you and your mom are when it comes to the set up! Love to all~

  34. Just want to say what a handsome &sweet boy.

    Love is sent your way

  35. WOW. Thank you so very much for taking what I know was many extra precious hours out of your day to let us see everything step by step. Thank God you are able to stay at home with Tripp- he could never receive the incredibly scrupulous care you give him from anyone else. Nothing like a determined mama's love....

    I know all of you eb mama's have made so many sacrifices to stay at home and give your little ones the very best care possible. Blessings to you all. Praying for peace and ease in your hearts, and for a cure to this evil disease.

  36. Wow. Thank you for sharing. I have tried to imagine what these things are like for you guys, and Daylon too, and I had no idea. You and your Mom are amazing and dedicated ladies. Seeing this makes it even more amazing when I see pictures of Tripp smiling.
    Good job! My boys and I pray for you and the other EB babies every night.

  37. Thank you so much for taking the time to share something so personal with those who care so deeply for your family. Its truly amazing what you have to deal with on a daily basis, your strength is outstanding and you truly are a hero in my eyes!!! I love you all and GOd bless!!
    Abby Anderson

  38. i don't comment often but i read all the time..praying for y'all all the time! tripp is just precious and he is blessed to have such awesome parents and family! i know he will teach others great things! you are one awesome mama~ much love and blessings from ga~ erin

  39. My youngest son was born with a large wound on his cheek and a much larger wound on his leg. There was basically no skin from his hip socket to his knee and his cheek also had a large amount missing skin. The wound on his cheek was almost star shaped and spread up into his hairline. He had little wounds all over him and healed scars at birth.
    He was also born missing his left hand.
    No one really has any answers to how any of this happened to our son. It was a complete surprise to us.
    It took several months for him to heal from those wounds and several years before they were not raw and sensitive. My husband and I spent a lot of time changing his dressings and keeping him quarantined to avoid infection in those early months.
    We were terrified but willing to do anything for our boy.
    I also remember ordering supplies like Aquaphor permeated gauze and special sterile dressings. I remember our doctor loading us down with supplies from her own reserves on every visit.
    My son does not have EB and eventually his wounds did heal but I remember those first months (and subsequent years) as a very difficult, gut wrenching time for all.
    I admire you for all you do for Tripp.
    Is there a way I could donate some supplies to your family or help out with the costs in some way? Is there anything Tripp needs?
    I can't say I know what it is like to have a child with EB but I do know what it is like to care for a child who is hurting.
    All my best to you, as always.

  40. Wow, he is really brave and tough to endure all of that, and you are such a gentle and amazing mother. Thank you for giving us a window into your world. We pray for you each night.

  41. I suppose it is the first time i'm writing. Tripp's is a brave baby and you a wonderful mother.

    I'm wishing with all my heart that soon a cure to EB will be found, no one, especially a baby or a child should go through that suffering.

    carla, luxembourg

  42. This has me in tears only because he is such a sweet baby boy who has to endure so much (as do other EB babies). You are an incredible mom. I am praying for your family.

  43. Courtney,
    Just wanted to say thank you for posting about Tripp and your life. You and Tripp are a wonderful pair. You know his needs and you do what you have to do with such love and compassion that it is amazing. You and all of us are under such amazing grace. I love to see Tripp's pictures. I think he is so precious and beautiful! Thank you again for sharing him with us.

  44. EB Sucks. Tears for your little boy...and for you. I can't imagine. There is nothing like a mother's love. You prove that daily.

  45. I cried almost the whole way through this post! Thank you for sharing it. It really puts everything into perspective. My heart broke when I saw the picture of his feeding tube area. Poor baby. The last picture though made me smile like crazy...he never ceases to amaze me. He is so handsome ! Continued prayers for that little guy and you !! You are doing such a great job !

  46. Holy smokes. While I've read Jonah's blog and yours for a while, I guess even my nurse mind didn't really comprehend what ya'll had to go through. Thanks for giving us this intimate glimpse inside your life with your sweet baby Tripp.