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Lisa, doctors figured out that my son needed OHS at 3 months. They planned to wait until he was 2 but at the age of 11 months they decided they needed to act. When they got in there, they fixed some things, but some things were not addressed. That was 19 years ago. He's had to see a heart doctor 3 times a year and some additional surgeries a few years ago. Other than that, he's a pretty normal kid.
I really identify with what you're going through. My heart goes out to you and your family. Scary does not begin to describe the anxiety one feels at the beginning of this journey. It sounds like you've got great doctors and these issues are more common than the average person realizes, so the procedures have been worked out and refined over decades. This stuff is only new and frightening to us because its off the radar of the average person.
As someone who's been there, I can tell you that you'll be OK and I'm confident Sylvie will continue to thrive!
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