Good thing he likes the doctor

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.

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3 Responses to “Good thing he likes the doctor”

  1. Lisa MacKenzie Says:

    Our son Linden has his vascular ring fixed when they repaired the holes in his heart at 3mos. old, but after that he still had apneic spells, then grew out of them at 8 mos. Keep your chin up.

  2. Ginger Says:

    I was wondering Wendy if you had told Henry what he has and if it has made any difference in your life. My daughter has 22Q and she is 8. As I type this Kendra is just coming back from stomping up stairs screaming and crying because her brother and sister were singing during Camp Rock the movie. Sometimes I don’t get her but I think that maybe if I explain to her what is wrong with her than she’ll be able to control it a little and maybe lessen her frustration levels a little. Does that make sense to you at all?

  3. Wendy Says:

    Hi Ginger:

    I see what you’re saying, but I don’t think it would register with Henry what I was saying, know what I mean? I doubt he would really understand what I was talking about. However, he has asked why he spends so much time in the resource room at school and I told him “because you need extra help” and that seemed to satisfy him.

    Tantrums and weird reactions to normal things are pretty much what goes on in my house too. We just weather it out, talk him through it if we can, and move on. Henry is deathly terrified of My Little Pony ponies (no joke) and every so often sister accidentally (yeah, right) leaves one on his pillow. :>) He flips out, we wait it out, and life goes on.

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