Tuesday, December 6, 2011

Follow up #2 (more pie?)

This morning we had another follow up appointment with the cardiologist.  Once again, she was happy with how Brea has been progressing.  She has further lowered the amount of diuretic, which continues to make things a little easier.  The big news is that she has given us the all clear to head back home!  Brea's parents celebrated the news with a pie each for lunch.  I was quite offended when the (Australian) lady working in the pie shop called me "a true Aussie". 

While we are obviously very happy that Brea has recovered to the point where they are satisfied to send us home, it is a somewhat strange feeling.  All of a sudden there is nothing ahead of us except the unknown.  We have no more surgeries to plan for (in many ways safety nets for if things don't quite look right in between surgeries).  While this is (mostly) a good thing, it is also a little scary.  If "things" develop from now on, there are very few avenues left open to the doctors to help fix Brea.  The cardiologist mention one such "thing" this morning.  For reasons that are not well understood, children after a Fontan operation at are risk of losing protein from their systems.  This appears to be a fairly serious problem based on the reading I have been doing this afternoon.  It occurs in approx 10% of Fontan patients anywhere from a few weeks to a few years after the surgery.  While there are some options for treating this problem, in many cases the only effective treatment is a transplant.

All in all, we are very pleased to get the all clear.   We are most likely going to start the trip on Thursday and hope to arrive back home on Friday.   We are looking forward to getting back to some resemblance of a routine, trusting that God knows best and has a plan for little Brea.

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