Thinking good thoughts, but also muttering “shit! shit! shit!” February 22, 2008

So we got the big call from the cardiologist today, and it wasn’t good news. Henry has the vascular ring thing, yes, and it looks like it’s compressing both his trachea and esophagus, so he’s most likely going to have to get surgery. The cardiac surgery team will be meeting Monday at OHSU to figure out if this is indeed the route they want to go.

Give your kid(s) big hugs and play with them LOTS today for me, okay?

Good thing he likes the doctor February 18, 2008

Seems like these things come in waves, don’t they? At least they do in our family. About two months ago, we had Henry go through a routine cardiology screening, something he should have gotten a long time ago because of the whole 22q deletion thing (usually it’s the kidneys or the heart that are bad, VERY rare that both are screwed up). What the doctors found was something called a “vascular ring”, which basically means that his blood vessels, aorta, etc. are wrapped around his trachea and esophagus.

Yes, that is as bad as it sounds, but crazily enough, he has NO symptoms, which has stumped the good doctors up at OHSU. Usually, kids with this are unable to swallow, they’ve got crazy asthma, and lots more fun stuff. But Henry’s got nothin’, which means that he’s got a whole team of befuddled cardiologists trying to figure out how he’s got this awful thing with nothing going on.

So! Tomorrow, he gets knocked out and undergoes an MRI. After that, he will be evaluated by said cardiology team to see if he gets to have his chest cracked open and his aorta repaired.

I’m trying to be glib and funny and witty about this, but I. Am. Terrified. He’s already gone through so much. I just am not trying to think about it, I guess. Prayers and good thoughts appreciated.