Friday, February 25, 2011


I wanted to thank you all for your thoughts as I took the Dancing Queen to her appointments today.  I just did a huge post on her carepage, so I will say here that everything went much better than I expected.  The Dancing Queen's heart is in better shape than it has ever been.  It is still not great, she still has elevated pulmonary pressures, and she still requires medicines she should not need, but we were specifically told she is as good as she is going to get heartwise.  She also managed to keep her GI doc happy enough that the g-tube was once again a dismissed idea.

I'm not sure how I feel about all of this.  I am very happy to hear that my baby is doing as well as can be expected, but it is hard to know she is not ever going to be any better.  She tires easily.  She still turns blue on us from time to time.  She is one virus away from catastrophe, but as we hear all of the time these days, I have to get used to the new normal.

1 comment:

  1. Thank you for sharing! Happy it was better than expected.


Having a child with a CHD is like being given an extra sense---the true ability to appreciate life. Each breath, each hug, each meal is a blessing when you've watched your child live off a ventilator, trapped in an ICU bed, being fed through a tube. Each minute is a miracle when you've watched your child almost die and come back to you.
Related Posts Plugin for WordPress, Blogger...