March 3, 2011. First time in 11 days I wasn't at the hospital. Don't know which is harder...being there or being away. Matt said it was a really bad night and bad day. Sy's ammonia levels are off the chart which means his liver isn't converting it. So they are trying to get that down but in the process had to calm Sy down. Right now Sy is spending too much energy fighting the Drs and nurses and needs to fight the cancer. If only he understood how important this is.
Doctors came in and told Matt they know what caused the HCC. Apparently he has a metobolic disorder (found in only one other child in the world). Sy was referred to as a medical mystery. Doctors are still confused and baffled how Sy is still functioning- ammonia levels this high should have put him in a coma and his liver is still functioning otherwise but the body isn't breaking down enzymes correctly and the ammonia is left in the bloodstream.....in Matt's words, "I hate science."
All this tells me is his body is fighting and giving the doctors plenty of time to figure out this "medical mystery!" So hurry up and get my super hero home! CANCER SUCKS!!!!!!!