Tomorrow's the day...

Tomorrow's the day.  Surgery is a big deal for any child/parent and we are no exception.  I want to share a little of why surgery is a big deal for our sweetness.
Finn is the first case of the day tomorrow morning which means for us a 5 am arrival time.  There are a lot of reasons why it is so important that Finn go first tomorrow.
  Fasting is something that Finn cannot do, he is fed through his gtube 24/7 because even a few hours without feeding cause his body to start to go into acidosis and that causes ALOT of trouble (think marathon runner at the end of a race) and for surgery they want him to have nothing in his belly so we get IV fluids of sugar before hand to head that off.
  Finn has a reaction to anesthesia called Malignant Hyperthermia (MH).  This is a condition where his body temperature rapidly rises after recieving general anesthesia and severe muscle cramping.  Finn gets monitored very closely after any procedure and has to have all of the "gas lines" completely cleared before he gets any sedation.  (in anesthesiologist language PAIN IN THE ASS if you aren't the first kid of the day)
   Stress in general is not good for our sweet boy that means pain, heat, cold and on and on and on.  His sweet body cannot handle it, so of course surgery and removal of things makes for a sticky situation.  We do our best to avoid all of this but reality is stress is apart of life, it happens.  All we can do is prepare his body and be vigilant to react when he starts getting into trouble.
  The hardest part of all of this is that while most of the anesthesiologists know about mitochondrial disease the don't KNOW mitochondrial disease.   I am Finn's mommy not his doctor but there are a lot of times that I feel like I am educating the people who have my son's life in there hands and that scares the shit out of me.  This is why we walk, why I raise money for the UMDF, why spreading awareness is SO important to me.  I want a doctor here in Charlotte that KNOWS this disease, I don't want to have to have a doctor hundreds of miles away caring for my baby.

  So tomorrow please pray for us, for our sweet boy, for the doctors AND for a cure.