Tuesday, October 18, 2011

Update, Reader's Digest, and EB Awareness

A lot has happened since the last time I posted, so I will do my best to catch you guys up.  
Since the night that I posted all of those videos, Tripp has literally had a good day, then a bad day, then a good day... etc.  I'm in the process (along with Dr. D and Trea, our super fabulous pharmacist) of trying to switch some of his medicines.  Within the past week, I've tried some new antihistamines to help with his itching.  O my GOODNESS, the itching has been horrible.  This poor child just never ever gets a break.  So, the antihistamines are brutal.  He was literally gasping for air about 30 minutes after I gave him the new medicine and it lasted almost all night long.  It's like it dried him up completely so that he couldn't breathe.  That was a horrible night.  So I stopped all of the antihistamines altogether.  He's on a yeast medicine and a fungal medicine in addition to trying every topical itch cream that there is.  The itching has just started to be an issue this past month, and from talking to other EB moms or adults with EB... it's something that is ongoing and nothing really helps.  Great. 

So as far as the skin... the wound cultures came back growing (I'll give you one guess)....PSEUDOMONAS.  And guess what?  There are no oral antibiotics left that treat it.  So this was my decision.  I said I would try Rocephin injections (the pseudomonas was sensitive to that) once and see if they could bring his white count down enough to try the G-CSF.  SO- as of this morning, he's gotten 2 injections of Rocephin IM (Intramuscular).  They are only once a day- Thank GOD (because that's horrible enough) and it's for 7 days.  I'm giving the injections myself... something that NO MOTHER should have to do, but I wouldn't want any one but myself doing it.  They are rough- thick and 2 mls of fluid going into rotating thighs each day.  I'm glad we are trying them, but this is not something that I'm going to do again.  SO PLEASE pray that these injections will drop his blood counts so that we can try this G-CSF at least ONCE, so that maybe it will heal something and decrease his constant infections.  That is my goal.  Will will hopefully be re-drawing his blood work on Thursday or Friday to re-check his counts. 
Oh, and I forgot to mention the diarrhea, bellyache, the bruising of the site, and the soreness that come along with these injections.  This child is a saint.  I can't stress that enough.

Ok, so now for the shout out to my super awesome followers.  There is a contest going on for Reader's Digest.  If you win, you get your story published!!  How awesome would that be for EB Awareness?  Right now, our story is in 2nd place- and all of my Facebook friends have been so awesome about spreading the word to vote for us!  Thank you so much to all who have voted.  You can vote EVERY DAY from EVERY electronic device (computer, smartphone, iPad, etc).  So please, if you think about it, take a minute to vote so we can spread the word about EB in Reader's Digest!  It would be a great prize with EB Awareness Week coming up!  
You can click HERE to vote!

Speaking of EB Awareness, I thought of an idea to help spread the word next week.  Since Halloween is coming up and everyone will be Trick-or-Treating, I created a flyer that can be handed out!  You can either hand it to the kids (or maybe parents) of the Trick-or-Treaters that come to your house OR you can take the flyers with you when you go Trick-or-Treating and pass them out to anyone you see!  This way, we can "Trick-or-Treat for Tripp" across the country:)  Here is the flyer if you're interested:

I hope it works to where you can save it and print it out from the blog.  If not, let me know and I'll find a new way to share it:)  
I hope everyone has a great week! 


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