Tuesday, October 29, 2013

She's a ZERO!!!

I think under ordinary circumstances that could be interpreted as an insult, but it's how Olivia was talking about herself all of Wednesday afternoon.  The staff called to let us know that she posted her first ZERO level of rejection since the transplant almost a year ago.  White blood cells continue to fall despite lowering the CellCept dose but she needs to be on the cocktail of Hecoria and CellCept so it's just something to keep an eye on.  Liv is currently fighting off a cold so maybe this is how the winter is going to go, but that seems a small cost to pay vs dealing with more rejection.  

During the cath they went and looked at all her coronary arteries, vessels, etc.  We know that she has some interesting semi-uncommon factor in her blood that allowed her to make these crazy Medusa like collaterals off the heart that don't go anywhere.  It's not hurting anything and it's not an indication of what her future holds; just something interesting.  Gee, glad she wants to be atypical there too (mom says tongue in cheek).  They originally tried to do the procedure through her right leg only to discover that Liv's right femoral vein is occluded.  This isn't uncommon particularly in kiddos that had central lines in their legs as infants like Olivia did post-Norwood.  Unusual is that the blockage is much higher up towards the abdomen vs within the leg itself.  Meh, every scar on that precious body tells a story of who she is, where she's been and where she's going to go in life.  

Halloween is approximately 48 hours away and she MAY be set on a costume. I only say may, because I'm still hearing about Doc McStuffins, Cinderella, Minnie Mouse but now also Snow White.  If she wore orange and black with this cute little witch headband she has, I'd consider that a victory.  Not to mention she needs to be feeling better, weather needs to cooperate, etc etc.  

Follow up care now is clinic in three months and another biopsy in six which should be less invasive and through the neck again.  Happy Halloween!

No comments:

Post a Comment