Thursday, February 25, 2010

EB Tool Kit, Genetics Consult & other things

Hey everyone.

I just wanted to thank everyone that has been taking part in my Avon Online Event, which is helping raise money to donate to DebRA.  And if you've been participating in Jonah's EB Auction - well then, a HUGE thank you goes out to you.  Both 'events' continue until the 27th, which is Jonah's birthday - so everyone still has a few days to partake of the fundraising. 
I mailed out Jonah's birthday card yesterday, so I hope he gets it in time!!
And yesterday (the 24th) was Elly's 1st birthday!!!  I'm so happy to see so many of these kids reaching this milestone!

Alright EB people, I need your input on something.  One of my favorite people (June) from Children's National in DC has been working to put together an EB Tool Kit.  Basically this stems from what happened the first time we had to take Leah to the ER back in July, prior to her trach being placed.  We had our little IV package from DebRA, lots of EB friendly supplies, and of course, our EB baby there - however the ER nurses flat-out refused to use my supplies.  Furthermore, one nurse made some kind of statement like "We deal with issues like this; heart: first, breathing: second; and anything else going on: last".   Well that's all fine and well with 99.99% of kids - but not my kid.  But anyway, that combined with what the jackass IV tech did to Leah's skin a few days later resulted in a complaint being filed by my Mom.  Part of the hospitals 'apology' was to create this EB Tool Kit that will be kept on hand for when EB kids come into the hospital.

This is what the plan for the box is so far (in bold) and my thoughts (in italics):
Skin Tape: Mepitac, Hypafix - Mepitac only .... Hypafix is really hard to remove, even with mineral oil
Skin Barrier Dressings: Mepilex Lite, Allevyn Thin - I'm adding Mepliex Transfer to this
Non Adhering Dressings: Mepitel - I'm adding Restore Contact to this
Dressings for Absorption: Mepilex or Mepilex Ag - since a silver product was included here, I'm adding PolyMem silver Non-Adhering Pad
Silver Products: Arglaes silver powder
Wrap: Tubifast, Webcast, Kling - I just wanted to add a note for the preferred gauze being Conco.

June is amazingly great ..... not only does she keep up on all things EB, she's willing to listen to me and actually values my feedback on this.  So ...... if anyone has any thoughts for things that need to be added, removed, tweaked .... please please please let me know either by commenting here or by emailing me at:

Speaking of the hospital: I got a phone call yesterday from the genetics department at Children's National.  I've been emailing with the dermatologist that Leah had there about getting us some information on the genetics side of things. 
(I know people are curious but feel weird asking - so ............ yes, if Jeff and I were to have more children there is a chance that our next child would have JEB - a 25% chance.  Because Leah's skin biopsy and blood testing weren't conclusive - Jeff and I need further info and testing on us to find the genetic defect that we are carrying.  Once we know that, we have two ways to go: IVF or just getting pregnant and then doing a test around week 8 that would test for the presence of EB). 
That's a short-story version, anyway.
Now some of that depends on what insurance will and will not cover.  But I won't even go into that. 

Basically, we have an appointment on the 8th to go have a consult with the genetics folks to see where we stand.  Bad news is that we have to go to the hospital ...... which we haven't been to since the day Leah died.  So we'll be there, in the place that reminds us so much of Leah and why she's gone, where her trach was placed, where she almost died in July, where she did die in December, where I've cried on probably every single floor; to talk about EB.  Should be fun. 


Emelie said...

HI Meg. Wonderful job. When Elly was born her fingers where her biggest problem and still is. Ryans mom said they put on Xeroform on the fingers to make them heal when the nails fall of. His fingers are healed today. We did not have that in Sweden and took mepilex transfer around the fingers and they just got worse. The fingers use to be a problem so maybe xeroform is good?!

Linda said...

Hi Love:
So glad that the EB tool kit is being put together. Hopefully you can receive some suggestions from our EB family out there. Thanks June!!
Sorry that you have to go to the hospital for the genetic testing. Sure hope it's not too bad for you guys. Love you both so much. Love Mom XOXOXOXO

Patrice said...

Hey Meg,

GREAT list! I think the Conco thing is important. It is WAY softer than any of the other (zillion) things they tried on Jonah in the hospital. Also, I have some of this but haven't tried it - Niltac. It's an adhesive remover. It might be good to have that too as I'm not sure that's a standard hospital thing. But like I said, I haven't tried it. I do want to order some AVON but may not get to do it until after the party (it's CRAZY here). But I'll order either way.

Love ya, girl.

Praying for your genetics consult.

Marybeth said...

Well I just think you are amazing...and your my hero...way to go helping out the EB families while still enduring your own pain....I wish I could give you a hug> I think about you all the time...your little sweety stole a piece of my heart!!!! My heart and Sam's too.....
Sam & Marybeth

Anita said...

Thinking of you Meg and think the EB tool kit is a wonderful idea!! That would have made each trip to the hospital much less stressful!!

Tracie said...

I just wanted to stop by and give you a (((hug))) today....just in case you feel a small sting from Jonah's birthday. After my son passed, it hurt when my neighbor's child celebrated her first birthday right after what would have been my son's. Ofcourse, I was very thankful that she was there to celebrate it because I wouldn't wish baby loss on anyone, but it still hurt. You may not have that feeling, and I hope that you understand what I'm saying. Just wanted you to know that I'm thinking of you today.

Michele said...

I just found your blog via another I follow and wanted to say Hi from a fellow PA resident. I'm in Montgomery Co. Leah is just beautiful. I read your archives and my heart just broke for you. Sending hugs...

Belinda said...

Hello Meg and wanted to tell you I think of you as well as Leah everyday. Keep up the great job your doing. Good luck and God continue to bless you and Jeff. Leah is a beautiful Angel in Heaven watching over her family as well as all the EB babies doing a great job. Love you.

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