'Interesting'

We had another follow-up appointment with cardiology today and I'm not actually sure how it went.  Christopher's blood pressure seemed a bit high (around 110) but we had a really hard time getting him settled down, so it's hard to know if that's an accurate measurement.  And they saw "something" on his echocardiogram, but they're not sure yet what it means.  

I can't remember if I described the repair that they did on the second surgery.  (If you're squeamish, skip the rest of this paragraph.) Basically they sliced his aorta lengthwise and put in a patch (made of Gore-Tex, yes the raincoat stuff) along the length of it.  Brad describes it as "adding a lane to the highway."  However, at one end of that patch (the end closest to the heart - right where the aorta curves into the arch), there is something sort of bulging into the aorta, which is partly obstructing blood flow there.  When they did the second surgery, they used as big a patch as possible, so that as Christopher grows, the patch can "grow" with him as much as possible - which means that at the moment, there's a bit of redundant material there.  They think the bulge is that extra tissue kind of buckling where the aorta bends.  

That obstruction is causing increased pressure in the aorta, but unfortunately since Christopher was so fussy, they had trouble getting really good measurements so they're not sure how bad the pressures are.

The question is, can we just wait for him to grow and the buckle will iron itself out?  Or do they need to do "something" about it sooner? (We didn't ask what "something" would be - I imagine more surgery but would prefer not to think about that possiblity just yet.)  If it's NOT the patch causing the bulge, what the heck is it and how do they fix it?

So, lots of questions.  And I had a hard time getting a sense today of just how concerned to be.  The cardiologist said he's never seen it before, but he did qualify that statement by saying that aortic repairs have only been done this way for about 5 years, and although it's now the world standard, the bulk of his experience is with the older repairs.  I think he was trying to say that just because he hasn't seen it, that doesn't mean that it's super rare.

He said he was going to contact the chief of cardiac surgery at Sick Kids to get his opinion.  (The surgeon who did the first two surgeries is on vacation and the other cardiac surgeon here at CHEO said he's only seen this a couple of times, too.)  In the meantime, Christopher has been booked for another echo on Tuesday, this time under sedation.  He won't have to be intubated again, they'll just give him medication to make him sleep soundly while they do the procedure.  So we'll be spending a good chunk of the day at CHEO on Tuesday.

I honestly don't know whether to worry or not at this point.  I will say, though, that I would REALLY like it if Christopher could start being the boring, uninteresting patient, instead of the interesting one!

Comments

[Meagan Cuddihy]

Nikki, we are thinking of you and Brad and praying that Christopher will be super routine and boring on Tuesday and that everything will literally iron itself out.

Please don't hesitate to call us is you need anything.

XOXO for all of you!

[Farandolae]

Sending hopes for a boring and routine echo tomorrow. Continuing to keep all of you in our thoughts and prayers.