Day 74.......

Sunday, December 2, 2012

Things are moving along.  Dillon's labs showed that in less than a week his body (with the help of the new super strong antiviral medication) has already cleared the CMV virus that I talked about a few days ago.  The doctors are shocked...as usual.  Mr. Pickle is true to form and gives them the unexpected.  A lot of kids take weeks to clear this thing and my boy does it in a few days...HAHAHAHAH...tell that to the researchers!!!!  The bump we hit on friday is that his stool cultures grew out Clostridium difficile, which is a bacterium that causes cramping and profuse diarrhea.....of course the Pickle has had neither.....hummmm, do you see the trend with this boy???  So another med is added to the list...that makes 23 pills every morning with 2 hours of infusions plus the steroid push and then 15 pills at night.  Good Lord if that boy has to swallow any more in a day he is going to SCREAM!!!!!  Drinking has become a chore and he is not taking in enough.  I think it is a mental challenge because he is forced to drink so much with all the pills, that during other times in the day drinking is just not appealing....so that means we are back on overnight fluids (not the nutrition part with fats and carbs and stuff but just a nice balanced saline with some electrolytes in it to keep him from getting dehydrated, which stresses his kidneys).

On to better things.....

Nana and Grampy are still here and tonight we drove to downtown Denver and rode a horse-drawn carriage around to look at Christmas lights.  We all agreed that the lights were not impressive but riding around, hearing the clip-clop of the horses hooves, chatting together, and feeling the cool night air on our faces while our hands and feet were warmly tucked under a blanket was really fun.  We then went out to a fun dinner of appetizers and desserts at The Cheesecake Factory.  It was super fun and relaxing and we all enjoyed ourselves on our last evening together. 

Dark picture but you see me and the boys in the carriage (Nana and Grampy were on the backward seat)

I have had a few people asking if we will be home for Christmas.  We will definitely NOT be home for Christmas.  Day 100 for Big D is December 28 and with the recent setbacks of the 2 viruses and the original setback of the gut GVH we will realistically have to be here until day 120 or so, which will include a surgery and recovery of removing his Broviac and port.   Of course.....as we talked about above, Mr. Pickle will probably surprise us all so who knows when we will be "released."

Oh yeah, I almost forgot.  Luca needed some "big boy time" with Mama so we went on a little adventure yesterday afternoon.  We found the outdoor skating rink in downtown Denver (it is like a little version of Rockafeller Center which was a highlight for Luca on our New York trip).  It is free if you have your own skates.......so off he went.  There were tons of people, most of whom clearly did not have much practice on the ice.  In true Luca fashion, he observed the others and proclaimed that he was indeed THE BEST skater on the ice.....and the fact that he had on real hockey gear made that statement oh so true :))))  A couple of kids and at least one parent stopped him and asked him if he did indeed play hockey and when he answered in his sweet and funny...."Well yeah" (and I just know he is thinking to himself.........can't you tell, I have on hockey gear...duhhh).....he was flying high.  It was great fun and he got his fill of Mama's attention for a few hours.

That is one good lookin' kid!!!

Luca tearing it up on the ice.