Saturday, September 17, 2011

Fontan news

Well...the dreaded word was finally uttered by a surgeon to us this week.  Fontan...sounds like something something you would get by lounging in the summertime...instead of the surgery I've been dreading and hoping for since the day Ethan was born.  Dreading it for obvious reasons...will he survive?  Will his little brain be protected during the surgery enough that he won't lose his beautiful personality and sweet smile.  And yet I have been looking forward to it only because if he has to have it it means that he is still alive!  We were given so little hope that Ethan would survive the first moments of his life that, to me, making it to the age where Fontan would be a possibility seems unreal!  We will hear next week a definitive date for his surgery.  We are shooting for the beginning of November.  The surgery will take all day.  Dr. Fraser will try to see if there is any way that he can make a four chamber heart for Ethan.  He is not hopeful of being able to do this.  We are praying that he will be able to!  It would mean that his life expectancy would surpass mine!  That is something that we have not dared to hope for!  If Ethan's heart will not be able to be made into a normal, four chambered one, then Dr. Fraser will proceed with the Fontan as planned.  The leaky common valve will also have to be addressed at this time.  This is going to be a long few months.  We are officially on germ lockdown...meaning Ethan doesn't go anywhere...until after surgery/recovery.  We are also extremely picky about who can come visit.  My older kiddos will have to use hand sanitizer as they get in the car from school, strip school clothes when they come home...and we are going to have to turn into clean freaks!  Elise is coming down with a cold so she is staying away from her little brother.  Ethan also has some congestion that we are aggressively fighting.  His lungs must be clear in the 6 weeks leading up to surgery or we will get bumped back to in the middle of the holidays.  I do not want to have him in the hospital over Christmas.