"Medically Fragile"

With every hospitalization over the past year I hear a term that I know the meaning to but just don't want to hear it applied to my baby.  Medically Fragile is the buz word that was used by many healthcare professionals to describe Avery during this visit.  Of course I know what it means but it is the acceptance that this is how my son is seen by everyone.  And if everyone but me sees him as being medically fragile then it must be true. What does it mean? That he is unpredictable and at any moment he can go from being great to coding.  While I know this is true it is just really hard to accept.  Accept that at a moments notice my beautiful little boy could be taken from me. You can just see drs. and nurses getting nervous b/c he tanks so quickly.  He even scared me during this hospital stay.  Just a simple color change in his face could mean something really big is coming and that just sucks.

This hospitalizations was really tough in so many ways for me.  Firstly, I had just been through an awful tragedy with my best friend and her family.  I was in one crisis while another one was happening in my own home.  Over the past month I have been so sleep deprived and emotionally spent.  Secondly, the trauma of almost losing my boy at the gas station and the panic I felt during that moment.  Especially having my daughter be there after what we had just been through (although I am thankful she was there). Thirdly, the acceptance that Avery is just getting sicker and sicker.  It is becoming much more difficult for him to rebound from a basic cold.  Here we are 4 weeks of antibiotics and lots of work just to get him home only at 60% of his baseline.  Lastly, what I had to deal with to get him home safely.  Let's just say, its all Political and everyone covering there own butts instead of worrying about the well being of a child.  I literally had a break down over this the day before Avery was released.  Many were shocked to see me shed a tear but I did it more out of frustration of the system and disappointment.  It was just not good. 

I honestly don't know how I will be when I lose Avery.   When I verbalize this, people will say "don't talk like that".  It is a reality whether people want to hear it or not and it is our reality. I mean how does a part deal with the loss of a child and in our situation it will be two children.  This disease has no rhyme or reason it just destroys lives.

Avery has had such a huge impact on our lives and so many others that I cannot imagine a day without him.  He had an IEP meeting today and one of my greatest concerns was keeping him with the same therapists and school b/c they know him so well.  I am happy to say that it was a non issue and he will continue to be home schooled and possibly attend the classroom at few hrs. of wk. next year.  But that was not what got me, it was the Avery love fest.  I could just see how many people love that boy.  You could also see the Avery love fest in the hospital.  He has just got so many people with that now toothless grin, crazy long eyelashes and crazy hair :)  One thing is apparent, Avery just eats up all the loving by everyone.  He is all about the love...

This basically sums up the last few wks for me, an emotional roller coaster.  I am just happy that we were able to get our boy home safely in the ambulance.  It was definitely for the best even though some people did not agree with it.  I don't care, I had to do what was best for him.  He is not back to himself and it's going to be a long road.  We just hope to keep him home and happy for as long as we can.