Wednesday, December 5, 2012

Day 6, More rash= no more picc

Quick update because Duck Dynasty Christmas Special is about to come on :-)  Gotta have my priorities straight.

Sage's rash spread and got worse.  It hurt and itched.  This prompted a myriad of specialists to weigh in on what they wanted to do next.  Opinions aree like ____, everybody's got one.
Sage's CF Doc (who we love) came in and sat down on the bed and she said:
 "What do you want to do." 
 Me: "pull the picc".  
Her: "you sure?", 
Me: "No... are you?"
Doc. G.: "No.... (smiles) Let's do it"
Me: (smiles)  "yup".
Her: (giggle)  "yup".

And so, we pulled out his central line 2 hours ago, in hopes that the rash will go down, despite giving him the same antibiotics orally. If he is having trouble with the PICC line itself, it's a double edged sword.  On one hand we may be able to use the every important list of IV Meds that are on his allergy list that he NEEDS.  On the other hand, you can't run those meds though a regular IV, so how do you give them? a  permanent port.  We are just not ready to go there yet.  Exploring the internet for "options" tonight, and I think I have come up with a few.  Outside of the box, as always.  Doctor G will get a kick out of special ordering central PICC lines off the internet....Yup (smiles).
In the meantime, we hope he doesn't need a different IV med because there is no IV sight anymore and would require another surgery to get a new one.

 In 24 hours we will know if Mom was right.  I hope she is as smart as she thinks she is.
What I do know is that we need to start ruling things out.  One by one. Make records, start getting some for sure answers.

If he starts getting better, we could be out of here by Friday.
If he the rash gets worse, or clinically his bloodwork shows internal struggles, 
then Mom will go with Plan B.  What's plan B?
I dunno.  But we always figure it out :-) Remember, that mom things she's smart.  CF will show her a thing or two.

Sage is not in pain anymore, and doing well.  His cough is 50% better, his PFT's are back up close to "normal", and for having CF, his lung function is crazy good. CRAZY unheard of good.

Doctor G reminded me today of something that is haunting me.
"He has Disease.  His cultures will never be clean again."
"It's about management, and making the very best of what we have, and you are doing that extremely well"

I just never prepared myself to actually hear the words that things will never be the same again.

Pain Ninjas.  They help when things get really bad.  They have ultimate weapons to help you fight the fight of your life, and win.   Hugs and prayers for my cousin.  Sage is passing on the pain Ninjas to do their duty and fight her evil nemesis.  xoxo

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