March 14, 2012
What a long day it was indeed. After a night that involved not one, but two dinners we thought we were well prepared for a day of fasting ahead of the cardiac cath today. Unfortunately the rest of the world kind of got in the way of all that good preparation. An emergency case bumped the entire schedule back at the start of the day, then an equipment malfunction during the second case and a longer than expected third case moved what was supposed to be a 12 or 1:00 procedure back to starting a little after 6.
Somewhat surprisingly Tim tolerated all the waiting and lack of food or drink very well. He didn't start to ask about eating until a little after noon and even then there was a little jest in his voice since he was well aware that he couldn't eat. It helped when mom showed up with a new distraction for Tim, a new (used) Nintendo DS along with some games. Tim got so engrossed in his games the rest of the wait became more of an exercise for mom and dad's restraint as they started getting hungry while waiting themselves.
Just before the procedure he yucked it up with the staff that was taking care of him making jokes, enjoying a short magic show from Dr. Wax and charming everyone he met. Then he got his pre-medication and almost instantly became incoherent in that cute way stoned kids are prone to be, babbling nonsense words that meant so much to him. Barely an hour and a half later and the procedure was complete with Dr. Wax reporting that everything went as well as could be and that he didn't see anything different than the last cath Tim had.
On the walk back to the recovery room the nurse mentioned that she wasn't fully clear why he needed the cath and after hearing that he was in heart failure and getting listed for transplant she was stunned saying that compared to other kids in the same boat Tim looked and acted so much more normal and healthy. Unfortunately this is the reality we've been living with for his entire life and wasn't too much a surprise.
We should get some feedback from the rest of the cardiac team regarding the impact that these findings have on the rest of the process tomorrow. Maybe the somewhat encouraging news from Dr. Wax will mean we won't have to sit in the hospital for the next several weeks/months waiting for Tim's new heart, but we are approaching it with the realistic attitude that even with this news he likely will still need to stay in the hospital. Guess we'll all find out tomorrow.