Day 4

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? 

Love,