Wednesday, October 5, 2011

Update, Babble Award, and some SUPER CUTE pictures I can only chalk up to the power of PRAYER!

So where shall I begin?  
I think I left off in the post before last about his previous lab work being too high to be able to start the G-CSF, and that we needed to find the source of Tripp's infection and treat it (HAHA) before we could get his white blood cell count down to be able to start this drug.  
SO... I mentioned last week that we started him on the one oral antibiotic that was left that we THOUGHT could still treat one type of his pseudomonas.  Well, about 3-4 days ago (after he had been on this antibiotic for about 3 days already)... his fever was only getting higher and he was really lethargic and not moving around much at all.  He looked awful.  
So Dr. Defusco decided that we needed to redraw his blood work- CBC, CMP, and blood cultures.
Dr. D texted our home health nurse, Kati Corso, and she was here the next day to draw his blood.  

Let me tell you a little bit about Tripp's nurse, Kati, because I truly believe that God sends the right people into our lives at the right time.  Kati works in home health (we are currently the only family she has on the Northshore- she lives in Destrehan) and she also works nights in the PICU at Children's hospital.  She is so thoughtful, so selfless, and a DARN good nurse.  Since the very first day she came, we fell in love with her, and I think she fell in love with Tripp, too:)  Kati has been a true blessing to us by being able to come whenever we need her (I know she would never tell me if she was just plain exhausted from working the night before)... Dr. D or I can text her, and she always makes plans to come out as quick as she can.  We are so lucky to have an AWESOME nurse, who also cares!!
I want to tell you, too, that in her spare time (ha), Kati is organizing the "Skip for Tripp" 5K Run/Walk in Destrehan next Saturday, October 15th.  You can visit the event page on Facebook HERE.  I know she's worked really hard doing this, and I truly appreciate her putting this together for us.  We love you, Kati:)

So, his blood work... Kati came out to draw it on Monday.  Tripp was SO GOOD for this.  It made my heart melt.  He barely even cried and just laid on the table so still.  Such an angel.  And then on Tuesday morning, the one and only Dr. Defusco came to the house again to discuss where we would go from here.  We got the blood work results that morning before she got here, so we had a chance to go over them.  His white blood cells were through the roof- way higher than last time.  This means no G-CSF (at least not any time soon- because G-CSF stimulates white blood cell production- and with such a high amount already, he could have a stroke) and it also means he is obviously fighting an infection.  His RED blood cells were VERY low.  Which isn't good either- this means he's very anemic.  It's no wonder he doesn't want to get up and play or move around- he's as weak as a cat (yes, Grammy, I stole your line:)

Here's what our brains came up with- a blood transfusion.  Yay.
I've thought about these before- obviously.  But it just didn't seem like a great idea to put him in the hospital and have to find an IV site, while of course risking him catching 45 other things while in the hospital.  So it kind of got put on the back-burner.  And to be honest, his red blood cells were always "lower" than normal- but never really low enough to need a transfusion... until now. 
The only way I would do this, though, is if we could do it here at the house.  And the only way we can do it here at the house is if we have a super awesome doctor and a super awesome nurse who would be willing to stay for 4 hours to let the transfusion run.  We are pretty lucky that we have both of those, RIGHT?  Thank you, Jesus.
So, Dr. D is in the process of checking to make sure we already have a type and match on him so we can get this ball rolling.  I, of course, will probably have to sedate him to be able to do this... but if it can give him just a little "boost," then it will be worth it.  

The Babble Award.  
AKA, The most special honor I've ever received in my whole life. 
Our story made the front page of

I was interviewed for this story by one of Babble's writers, Christina Couch.  She was so kind.  I actually cried on the phone with her.  I felt so bad.  I had to answer a lot of questions and talk about things that I haven't talked about in a very long time, and she was so sweet and understanding.  I am truly honored to have our story posted on the front web page!  This is so great for EB Awareness.  Thank you again to everyone at for making this possible and for all of your kind words in your e-mails to me this week!  And of course, to everyone who voted for me:)
Please check out the story HERE.

Speaking of EB Awareness... I was in tears last night when I received an e-mail from another EB mom.  She went on to say about how "down" she had been about her son having EB (the feelings of guilt, hopelessness, etc).  But that she had "happened" upon my blog and it had helped her to get through some of her tougher times.  She then told me that the other day a stranger came up to HER in public- and mentioned the word "EB"- to HER- before SHE DID!  She said the woman smiled at her little boy, she didn't look at him "funny" or it wasn't "awkward."  She then said the lady told her that she had read my blog and was aware of EB and what is was.   
Tell me this is not... 
A. M. A. Z. I. N. G.
This is what I mean about spreading awareness.  Things like this are happening because all of YOU are helping us to spread awareness to this horrible disease.  If ONE less child gets ridiculed or "stared" at because we can educate people about EB, then it is worth it!  
That right there, my friends, puts the biggest smile on my face. 

And now to the "super cute pictures that I can only chalk up to the power of PRAYER."
In the past 2 days, Tripp seems to have felt a little bit better.  After Dr. D left yesterday, I went back up on his Acyclovir (the anti-viral drug)- so maybe he had that going on again and needed a higher dose?  Though I did write a post insinuating that we could use some prayers, too:)... so I definitely think that all of the prayers give us a little bit better days (drugs or no drugs).  He's still not getting up to play and is VERY weak, pale, and running fevers.  But he has been in a better mood and giving some super cute smiles in the rocking chair!  He will probably have the worst day EVER tomorrow because I'm bragging on him, but o well... I couldn't pass up sharing a few pictures!
These are all "smiles" by the way:)  Mommy's angel.

And introducing... Our new rocking chair!!!  
Our old one had WAY too many miles on it, no butt cushion left, and WD-40 didn't even help the "squeaks."  So it was time to upgrade.  I LOVE IT.  It swivels, glides, and reclines!  It's so comfy and has a lot more room for my growing boy:)  Well, he's at least growing in length! 

"I tell you the truth, if you have faith as small as a mustard seed, you can say to this mountain, 'Move from here to there' and it will move. Nothing will be impossible for you. "
-Matthew 17:20

PLEASE continue to pray and have faith in Tripp's miracle.
We have to TRULY BELIEVE that it's possible. 
I know it is. 


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