Thursday, September 29, 2011

Hello Hello...

It is 12:37am and I am just starting to type.  I really should be sleeping but my 5 hour energy drinks tend to kick in around this time.  I may possibly start drinking them around this time, that way I'm energized and ready to go at about noon the next day when I actually need to be:)

I first want to send out a HUGE thank you... 
#1: To for hosting the "Mominees who are changing your world" contest this month.
#2: Again, to Melissa Pline, for nominating me for this award. 
and #3: To everyone who took time to vote for me!
I won in the Inspirational category and won $5,000 donated to the charity of my choice! 
I chose DebRA, as I am very grateful for the help they have given us directly after Tripp was born. 
To win this contest and see the people who voted for me and left comments on my nomination was so humbling.  I think this is the biggest honor I've ever received.  
I am truly blessed and I thank you all for making this possible. 
You can view my win HERE.  

Things have been just plain rough around here.  Today made 4 days straight that Tripp hasn't stood up to play.  He just rocks the entire day, occasionally smiling and playing a little in the rocker.  But mostly not even wanting to move much.  He's back to running his low grade fevers and pretty much just feels plain YUCK about 95% of the day.  He is currently on 2 antibiotics: one that I stopped today due to MASSIVE diarrhea, even with probiotics.  

And this is the latest on the G-CSF: The doctor who Dr. D and I are communicating with in Tennessee wanted us to get some baseline labs (blood work) before we could talk about starting this drug.  So we did... and (I think I mentioned this in a previous post) they were a bit out of whack.  His white blood cells were elevated and his platelets were elevated- which for Tripp, is what we are used to.  But, understandably, when a hematologist sees these labs, it's a little bit different.  He said that he couldn't start Tripp on the G-CSF with his blood counts like they were because he would probably have a stroke... (which is actually something that is possible on a daily basis with Tripp, being that his platelets stay so elevated).  But I totally understand his point of view.  So he told us that if we can get rid of the infection Tripp has (hmmm... which one?) that he would start him on the drug.  
This now goes back to everything I said I was not going to do.  
The prying and the poking.  
BUT... I also don't think that I will have a clear conscience if I don't try this drug on him at least once, just to see what it does.  If it can give him a little relief anywhere- his mouth, his sores, his breathing... it will be worth it.  
So, right now we started him on 2 oral antibiotics (we are trying these one more time before we decide on any prying and poking).  One that is for his mouth/ears- in case he has an infection brewing there.  And the other one is the only one left that we think still treats the type of pseudomonas that is covering his body.  But the antibiotic for his mouth/ears is giving him diarrhea.  BAD.  So I stopped it today.  Diarrhea + bandages + an "already raw to begin with" butt = a nightmare.  
After we finish this antibiotic, then we will re-draw his blood work and see if his counts dropped then go from there.  Please pray that they drop so we can have the option of trying the G-CSF.  

His breathing has been just a little bit better.  He's been at the highest dose of oral steroids, on new and stronger nebulized steroids, and on continuous oxygen for about 5 days now.  I've had to start sedating him again for his baths because he gets so upset that he can't breathe.  When Dr. Rodriguez came to the house about a week ago, she looked down his trach with her scope and said that his airway was floppy and that every time that he went to breathe "out," his airway was collapsing.  Lovely, right?  So she ordered him a bigger and longer trach, hoping that we can "bypass" the floppy part of the airway.  Well, the trach came in today- I texted her- and she is coming in the morning to help me put it in (she's afraid it may be hard to get it past the "floppy" part) and then scope him again and make sure it's the right length.  Talk about service, right?  I am 110% positive that God hand-picked Tripp's doctors.  They are absolutely amazing and I could never say enough wonderful things about them.  Never once have I had to ask Dr. Rodriguez or Dr. Defusco to come to the house- they offer every time.  They are angels. 

So since Dr. R is coming in the morning, I did something horrible and skipped bath tonight! 
I know... this does NOT happen often, but mom and I decided that he was just feeling horrible, having way too much diarrhea, and if we were doing a trach change in the morning already, then we might as well just wait and do everything in the AM.  But as I'm laying next to my little angel right now, I'm thinking it wasn't the smartest idea because he's itching so bad and so restless in his sleep.  This proves to me that every other day is the only option for baths.  My poor bub:(

Guess what?? 
It's that time again... COLD AND FLU SEASON! 
And I know you all know that kids haven't been allowed in this house in over a year now, but I'm going to ask again that even if you are AROUND a child, adult, animal, or ANYTHING that even looks like it might have a cold or is sick, that you pretty please stay away:)  
I love you... but I love Tripp just a tad bit more. 
And right now, a simple cold could kill him.  Literally. 
And he's #1 priority, of course.  

Because "Who's the cutest baby boy in the world??"

Duh :)


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