DAY OF LIFE 98

Today is Saturday and I am still being fed soley on IV fluids.

My mommy was a little (a lot actually) frustrated at all the testing they HAVE done and are STILL doing on me each day.

All of the testing is making me get NO-REST...AND... I have another infection to boot...so she wanted to discuss these concerns with the Doctor in the "daily rounds."

My CRP is 5.8, which is up from 4.0.  We aren't sure "why" this is going up.  Another surpirse...I am full of surprises...Could it be a mystery infection?

During the rounds, the Doctor gave my mommy a few "options" for me. 

Due to my 9/14 translocation, he wanted her to think long and hard about "how long" she wanted to keep going "forward" with "medical" procedures and how aggressive her and my daddy wanted to be. 

He said that no one knew for sure how long my life span would be or what the quality of my life would look like and he wanted them to consider how long of that time they wanted to spend IN the hospital, running tests.

So, he wanted to be sure that she and my daddy wanted to continue moving forward with medical intervention.  He said that we can find some things and fix some things, but the underlying problem may indeed be from my translocation, and they can't fix my DNA.

He agreed that they don't know anything about a child like me (no "documented" cases) so it's all very uncertain, but he wanted to know if they were on board with keeping me in the hospital - even though I am very immune compromised, prone to infection and the longer I stay here to keep "searching" for answers, it means MORE TESTING and possibly more infections...OR...if they wanted to take me home to "hospice/comfort care" so my family could spend time with me, (without medical intervention) however long that may be.

My mommy knows my daddy very well AND they have been offered this "option" for me before, so when she "understood" what the meaning of "hospice/comfort care" really was, she immediately said that this was NOT AN OPTION for our family.  PERIOD.  I am a strong little boy and have made it through so much already, and there were many times that I was much more sick than I am right now and I pulled through. If I wasn't supposed to be here, then I would have gone "home" already. 

I am a fighter and I am very determined.  I have a lot of support from my family and friends that make me stronger everyday.  I also am NOT an accident.  God made me just the way I am ON PURPOSE and I have a purpose.  My purpose is to keep moving forward, and that's exactly what we are going to do.  

Keeping the ultimate faith for my wellness.