1/15/15

Back in the Swing

School started back up for Carla on the 5th and I am sad to say that on Thursday the 8th, when I picked her up from school she was crying and said that she felt so weak.  When I got her home I found that she had a temperature of 101.2.  I took her to the pediatrician on Friday, they did a nose swab and when it came back negative for the flu, it was decided that she probably just had a virus that needed to run its course. Carla had fevers all weekend and was nothing short of miserable! I took her back to the doctor on Monday and we were prescribed an antibiotic. She had some blood work, which showed that she is in fact fighting some kind of infection.  After that first dose of the antibiotic she was already getting better. I personally feel that we are battling the same bacterial infection that she was diagnosed with in December (or was it November or October).  I don't think it has ever fully cleared up and when they started her on a third immunosuppresant I think it gave the bacteria a chance to flare back up.  It has been so hard watching Carla suffer so much. I wish we could get her back to a good baseline and that she could feel better.  The doctors did discontinue her statin while she was having fevers, because it can cause weakness and muscle pain during fevers.  That explained why she felt so horribly on Thursday. Yesterday the docs in Seattle told us to discontinue Carla's Cellcept (which is one of her three immunosuppresants) until she is feeling better. I told them that her fevers were better but that she was still battling the cough.  They said to discontinue and that they would discuss her during their weekly meeting and call me today with a "plan".  I have yet to hear from them, so I am yet to know what the plan is.  I am hoping that it involves not starting her back up on Cellcept. In my opinion, it is ridiculous to have her on three immunosuppressants when she had a rejection score of ZERO. Yes, she has been diagnosed with coronary disease, but still, three drugs to knock out her immune system during flu season is a recipe for disaster!  

Here are some pictures from the past couple of weeks :)  

Love, Jen

Mario, before his haircut. 

Carla, playing with play dough 

Stacking...

She's pretty proud of herself. 

New Years Eve!

Dancing to Train during the New Years Eve tv program

Labs on January 2nd - she sat all alone for the first time ever :)

Snuggling up her puppy.

I mustache you a question (being silly at the doctor's office)

Snuggling :)

Burrr!!!

Mario, comforting his girl...
This morning before labs.  

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