Prayers for Hailey.

Tonight I have a special prayer request.  

Hailey Visbal is almost 5 years old and has already been through so much.  She has a number of medical problems: Epilepsy, Celiac Disease, Alopecia, but the worst one is Encephalopathy (brain disease).  Her episodes of Encephalopathy have varied in length and severity, but they all start with hallucinations and becoming unresponsive, then she deteriorates from there. Her encephalopathy is of “unknown origin”, meaning they don’t know what’s causing it.  She has had 9 episodes, and they don't know how to fix them. 

Hailey is currently back in the hospital and not doing well.  Her mother, Robin contacted me and asked for me to post her story, so that we can rally up the prayer warriors.  So PLEASE say a prayer for Hailey tonight.  We don't know exactly what she and her family are going through, but we know how it feels to be in the hospital and scared of the "unknown."  

Isn't she beautiful?  Check out those eyes.  

You can visit their family website here.  Please go and show them some support.  

Love,

Day 5

          I'm curious about the bandaging.  I understand his skin is so fragile.  Are the bandages meant to act as a second skin? To prevent more sores from starting and/or protect current sores from infection?

I'll give you an example of just HOW fragile.  The other night when Tripp and I were just laying in bed together, (he thinks he's an owl, so he's up all night and sleeps all day) I was singing a song and (lightly) patting his head.  Mind you, I am tiger mom and have been caring for his skin for 18 months and I know thought I knew how to touch his skin.  Well he was patting right along with me on top of my hand as I made up a song to sing.  And when we stopped, I could see about a dime sized little raw spot where the skin just rubbed right off.   Sigh.  It doesn't even phase him, though.. and that's what kind of makes me sad, because I keep going back to that time that I walked 2 miles in my new tennis shoes, and when I got to the last stretch... I had raw blisters on the backs of my heels and everytime I took a step and they rubbed- I seriously thought I was going to die.  He's so strong- he's my hero.  

So, your question... right, sorry.  Yes, the bandages are for both- to act as a barrier to protect the skin from any type of friction AND to prevent the open sores from being open and at risk for infection.  And underneath all of the bandages is that thick layer of aquaphor so that if there is friction, the skin will be slick and protected.  And yes, a lot of people would think that if they were "left open" that they might heal better... but we could NEVER pick Tripp up by his bare skin- not even for one second.  It would destroy his skin.  And when he was little and not so active, we tried to let him "air out" but the sores would either stick to things or dry too much and then blisters would from around the dry scabs.  If I could bandage every inch of him- from head down, I would.  

Every time we bathe him and he's naked, I think about how bad I just want to be able to pick him up and throw him around in my arms.  It hurts that I can't do that.  But that really is why these EB children are called "Butterfly children"- because their skin is just like their wings- it just rubs right off... at least Tripp's is.  

Do those wounds on Tripp ever heal?

I mean if he gets a blister, is his skin even able to make it heal up theoretical?

Every child with EB is different- even if they have the "same type."  Some kids get blisters more often and they are larger, but they heal within a week or two.  Tripp's wounds take months and months to heal- IF they ever do.  He has some scars on his thighs/groin area from blisters that have healed since he was a few months old.  But honestly, most of his wounds have been the same size, the same redness, and had the same drainage for months and months.  They just DON'T heal.  There is no buttpaste we haven't tried and very few ointments and dressings we haven't tried.  I think it just has to with "him."  I also think that the depth of the blisters play a significant part in healing.  I've found that the deeper the blister, the longer it takes to heal.  If the blister is just the very top layer of skin, it may heal within a few weeks.  

We thought that his nutrition was playing a very high role in healing (we thought he wasn't healing because he was undernourished).  Which, in all honesty- I don't know if Tripp will EVER be adequately nourished as hard as I try.  I don't even know if his little insides are aborbing everything he's getting.  But since I started blending his foods, and giving him his zinc, iron, vitamins, protein supplements, etc.  His sores haven't changed at all either.  So I'm convinced that it has something to do with his type of EB and his missing protein (maybe... who knows).  

      I'd like to learn more about the complication of EB aside from the skin. I think there are other complications we don't hear about as often as blisters, cuts, sores and other skin problems. Or are there? Or even, the not so obvious complications that arise from having fragile skin.. like stomach issues??

This is a tough one.  We have NO clue what is going on inside of Tripp's body.  And that is SO very frustrating.  With everything else that he has to go through, no doctor in their right mind would want to do any more tests "just to find out."  Because 1. What do you do about it if you find something?  and 2. It will usually cause more harm to to the tests.  

But yes... he absolutely can be getting blisters inside of his body (his intestines, stomach, esophagus, lungs... etc).  Especially in the Junctional type of EB.  If you would see the inside of his mouth (horrible)- it sure makes you wonder what's going on every where else.  That is why we have to be so careful about what he eats (or in Tripp's case, what goes in his feeding tube).  Because anything rough going around in his intestines could cause a blister.  But not only that... think about peristalsis (the movement of your stomach and intestines breaking down and digesting your food)- that's friction, right?  Hopefully things are slimy enough in there to keep from causing a blister but you never know (that was gross, I know... but true).  

Ok, anyway... other complications- well... in Juctional EB, you are mostly dealing with the skin and the inside issues (trachs, feeding tubes, the EYES (ugh))... so I'm not too familiar with all of the other complications that can go along with the Dystrophic types of EB.  I know that the Dystrophic children get the usually get the webbing of the fingers and toes... which I'm sure with time causes other growth and development issues.  It's sad, but with most Junctional kids (esp Herlitz) they usually don't even get to find out if there are bone growth and developmental issues because most angels don't make it past their first or second birthday.  This is not my best category, so I'm sorry if you wanted more :(

Now, I want to share some pictures with you of some really fantastic people who are doing some really great things to bring about EB awareness this week.  Remember when I told you about the very nice lady (Mrs. Gail) at the uniform store in town (Lifecare), who made me cry because she bought my 3 pairs of scrub pants for me- just out of the kindness of her heart.  Well- since then she's sent me 6 more pairs of pants and tops.  I know, people are just so kind.  Well, she also set up a table in their store this week to bring awareness and sell DebRA bracelets in honor of Tripp.  I was touched :)  See? 

These are some really great, thoughtful people.   And, Mrs. Gail's daughter, Regina is a member of Theta Phi Alpha here at the local University (SLU) and her and her sorority sisters also sold DebRA bracelets outside of the student union all week.  And handed out information about EB, as well.  See? 

   I just cannot tell you how happy this makes me.  18 months ago, no one around here (or a lot of places for that matter) ever knew that this horrible diease even existed- and now each day, maybe just ONE more person is learning about EB, and about the struggles these children endure each and every day. 

Thank you, ladies.  I am forever grateful!! 

And also, there is a very special girl who is doing her "senior project" raising awareness about EB and raising money for Tripp (and I don't even think she knew it was going to fall on "EB Awareness Week").  Her name is Kami Lucia and she goes to Destrehan High School.  She is putting signs in people's yards that say, "You've been Tripped."  Then she also leaves them a flyer at their door, explaining who Tripp is, and what EB is.  Then the sign stays in each person's yard for a week- and every Sunday, she goes back to pick up the sign, the donation, and the flyer saying who that person wants to "Tripp" next.  And it continues... SO CUTE, right?? See? 

 I thought it was SUCH a cute idea.  And I had nothing to do with it!  What an awesome girl to take on such a special project for my little man, huh?  AND an AWESOME and FUN way to spread EB awareness!!  Thanks again, Kami:)

I am LOVING EB Awareness Week and all the people who are showing so much support to my family and all the EB families out there.  This is so important to me and is also showing me how really GREAT people can be.  And like I always say- Yes, EB is a horrible, horrible disease... but if our story can touch ONE life, or change ONE person- then there is a purpose and a reason why it exisits.    

Love,

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,