Sunday, October 16, 2011


Soon after my last post we finally got the official word from Pittsburgh.  They called to tell us that after reviewing Kyle's case again they sadly have nothing to offer him.  They told us at this point all we can do is keep him as comfortable as possible and enjoy our time with him.  I have to say the conversation was short, poor Jack had just gotten home from school and we were having a snack together...the next thing he know his Momma is bawling and speechless.  I called Mark at work and could only whisper the word Pittsburgh...

After meeting with his Drs here we know that this was probably coming but it still hurt deeply.   I will admit I pleaded with the transplant coordinator, asking her what I was supposed to do...wait for an infection to take his life...continue to watch him suffer with chronic pain and exhaustion?  As his Mother how the hell do you do that?  After 7 years of fighting for his life I'm supposed to sit back and   I'm his Momma, I fix everything. 

I guess the worst part of the day was Alex coming in and asking me what was going on.  After telling her we would not be traveling to Pittsburgh her face completely fell and she asked me if her brother is doing to die?  How in god's name do you answer that?  It was almost as painful as the phone call....for Alex's privacy I won't get in to our entire conversation, please know we are getting help for our kids and I do appreciate all the emails with suggestions for them..

We are so heartbroken, but we are not giving up.  For now we are keeping our Kyle comfortable, we are exploring some options to keep him even more comfortable while trying to listen to his wishes of no more surgeries...His care is increasing and I'm finding it more and more overwhelming...I'm juggling with trying to be his Mom and his nurse, there are days where it hurts so much..I want to hold his hand not hold him down. 

We leave for our Make A Wish trip to Disney in less then 2 weeks, we are so nervous but incredibly excited...praying our sweet boy can enjoy all the things he's been talking about for the last 2 years.