5C16- Rash day 7: Bustin out.....again!

So, without any further adue....We're outta here!
If all goes well overnight, which we do expect, Sage can be released tomorrow afternoon.  There is of course a BIG catch.  We have to be re-admitted after the 1st of the year for another week-2wk stay....maybe longer (but i hope not).  

Sage's rash biopsy stitches

Sage's internal systems are stable, his kidney function is stable (but still high), but most importantly his Eosinophil levels (associated with the severity of the rash progressing into his other systems) is just a bit lower.  That is enough for the experts to call him stable and on an improving path.  After grilling his CF primary and the head of infectious diseases from the EPA, he is safe to wait out the rash at home for a few days.  When the rash is completely gone, we need to come right back and be admitted again to re-start his antibiotic treatment.

Here's the catch.  Because his resistant M abcessus (AFB)  infection is so rare, they are consulting with experts outside of UNC, including the EPA.  It is absolutely necessary to do the 3 antibiotic combo.  It may even be necessary to go back on the medicine that caused this problem in the first place, the chphalosporin Cefoxitin.  That may keep us in here for quite a while with the same issues the next go round.  The duration of the continuing treatment is also up for discussion. No kid has ever had these particular problems with this resistant species of abcessus before.  Of course, it couldn't just be easy.  Sage is pretty much blazing a new path for treatment in this situation. So, we are coming up with the right answers as we go along. The art of medicine.  I am honored to be such a huge part of the decision making process that will help a lot of other kid's treatments in the future.  It puts things into perspective.  Scary and humbling.


Santa is busy wrapping gifts.  Santa's nursing elves came around the floor and gave every single kid a huge SACK OF TOYS!  In Sage's sac was lots of candy and chocolates, movies, stuffed snowman, Christmas fleece blanket, gift cards, colors and books, 3 games,  and a digital camera!!!!

The other piece of good news is that Sage's picc line has worked its way out far enough sop that he can get it taken out for the week we are home  :-)  He will have to get it replaced as soon as we come back.

Covered in Candy, a kids dream come true :oD

But all that's no matter.....we go day by day.  We are very thankful to hopefully be going home for Christmas.  And even when we come back, Sage has the best team playing for him to beat Dress Syndrome AND kick butt on the AFB infection.  In the big Battle, another winning day for Sage.
I will update the blog from home after Christmas :-)


Merry Christmas <3
xoxo  Mommy