Thursday, September 27, 2012


Hi everyone.... so sorry for the "cliff hanger"". We are home an Lilli is doing AMAZING. Lilli fell asleep on the way home and I'm about ready to crash as well so I'll try to make a brief semi-coherent point.

The cath showed that her heart is most likely ready for the Fontan (next open heart surgery).... her lungs on the other hand now one knows. There are NO documented casing of any child EVERY having plastic bronchitis (casts formed within the lungs, with potential to block airway) before the fontan is performed. Thus if the pressures get worse on her lungs after the Fontan things will not be good.

Also her "leaky valve" doesn't seem to be a major issue, so that's good. But she does have another vein causing some issues which could be "cut"during the fontan and be fixed. 

So, bottom line we are confused. We are going to get second options and try to find an expert on plastic bronchitis and get there thoughts. Either we "try" the fontan and potentially cause reversible and potentially deadly results (or hopefully good results like most fontan patients have usually have about 10 years of heart health). Or we do nothing and let her enjoy life and slowly watch her deteriorate. I vote for a MIRACLE!

Thank you for your prayers today (and every day). Off to bed I go.