Fontan?

 Family picture.  L-R.  Mom, Nolan, Natalie, Elise, Craig, Daddy and Ethan

Ethan being cute on the fireplace.



So...we were supposed to have had this over with by now.  By now Ethan was supposed to be home, doing well, and life back to normal....or as normal as it gets around here.  but November 16th came and went with a wheezy cough and two lung transplants that bumped us from surgery.  Reschedule for Dec 15th is not going to happen due to c-diff.  C-diff that could have been avoided had big brother's school sanitized properly after an outbreak in November.  But that's a whole other story that I really don't want to get into.  Suffice it to say, the school has now been sanitized and I probably can't ever go back there. LOL  We have not been rescheduled for the third time for Dec. 21st.  I'm grateful that they can work us in but now I really don't have a clue if he'll be able to make it out of ICU for Christmas.  In the grand scheme of things I know it is a little thing.  But Christmas is a time for families to be together and celebrate...not for laying in the hospital or watching your child try to cope with  a pain level that I'll hopefully never have to deal with.  Fast forward to this morning.  We're back in the pediatrician's office because Ethan has a runny nose and a sore throat.  Rapid strep came back positive and we can't treat it because we don't know if it's live bacteria or dead.  If it's dead we would bump ourselves out of surgery if we treated it.  If it's live we will know when the culture comes back on Thursday.  We will have to treat it (of course) and we will have to be rescheduled for January.  As much as I don't want to be in the hospital for Christmas I DO NOT want to be rescheduled.  Ethan's 02 is trending lower and I don't want to have to give him oxygen at home so that he can make it to surgery without neurological deficits.  I just want it to be over.  The hardest part right now is not having people understand how frustrating it is to be constantly bumped and how angry you get at things that normally wouldn't bother you.  I'm trying to stay calm and level for my kids but some days it is an epic fail.