Thursday, July 10, 2008

Tick Tock

Looks like life will continue to get harder for a bit longer.  Miles had a check-up with his regular pediatrician today.  Our main concern was his increasing fussiness and almost-to-sprout bottom tooth.  The doc' main concern was different.  Apparently Miles has gained too much weight from last week, almost 11 ounces.  She thinks this is a sign that our little man is storing fluid in his lungs- a nasty side-effect of the heart failure.  The change in behavior could also be linked to cardiac issues.  You can tell he is uncomfortable.  It's hard to get Miles to settle down, and he gets worked up very easily.  These are frightening times.  I sit and obsess over the upcoming operation.  There are so many what-ifs; I am losing breathing room.  We have 15 days to go until the surgery.  8 days until the cardiac MRI.  7 days until we meet with the surgeon.  5 days until we meet with the cardiologist.  18 hours until I am back at the pediatrician's office for another weight check and potential adjustment of the new diuretic medication.  1o seconds until I lean down and kiss my son's forehead.  

1 comment:

Unknown said...

Oh, Anna... I can't even imagine how scared you must be. But Miles is a strong, strong kid, and you will be so amazed at how resilient he will be.

I'm not sure if you remember him, but Lee Best went through a similar thing with his son, Landon, who has Down's. It was hard and scary, especially since he was so young -- I believe he had five heart surgeries.

He's now 6 years old and running his Pre School like he owned it.