Thursday, November 19, 2015

Consults in Houston

We had Aberdeen's surgical consult at TCH yesterday. It was a very long, disappointing day. We're sticking around Houston today for some more appointments and I will update here as we know more. Abby's still acting like her spunky, smiley self, for which we are so grateful.

From Facebook last night:

Well, very little today went as hoped. Due to some confusing circumstances, we ended up waiting 5 hours past Aberdeen's scheduled appointment to actually be seen by the surgeon. He essentially said that there are no good options. They can try the myectomy, but because of her size, they really won't be able to remove much of the thickened muscle. And while removing what they can MAY reduce the risk of things like pulmonary hypertension, it won't reduce the risk of sudden cardiac death, arrhythmias, etc. Because of everything else she has going on (ongoing cranial issues, sleep apnea), he's not convinced she'd make a good transplant candidate. We've scheduled a last minute echo for tomorrow and will hopefully meet with the cardiomyopathy docs to get their take on things and determine if they think she needs to be monitored inpatient. We're pretty heartbroken right now and hoping for even a smidgen of better news tomorrow.

Update after today's appointments:

We just finished up with our appointments in Houston. You want to hear something completely baffling? It turns out, Aberdeen's left ventricular outflow gradient is no different than it was when we left never was. Her first echo here read a little higher than 100 because she was being a fuss-bucket, but the two really high, panic-inducing readings from the local cardiologist were inaccurate. Aberdeen's heart is a confusing place, and the regurgitation across her mitral valve (whose numbers can be quite high) was being mistaken for the gradient across the aortic valve (the outflow from the left ventricle). Apparently it was an understandable mistake given Aberdeen's anatomy, and we should only be doing echoes with a cardiomyopathy specialist from now on.
Just as the cardiomyopathy docs have always told us, the gradient number doesn't really matter, her clinical symptoms do, but it DOES mean that her condition isn't worsening at an exponential rate. It doesn't actually change anything the surgeon said yesterday - if she becomes symptomatic tomorrow, we'll still be in the same place we thought we were yesterday, but because she is currently mostly asymptomatic (she's had a weird day here and there that have given us pause, but her symptoms haven't been consistent so far) it isn't a discussion we have to have TODAY. Which we'll take.
They've upped her beta-blockers and are doing a Holter to make sure there aren't any underlying arrhythmias, and we'll follow up with TCH again in a month. We have to keep an eye out for all of the same symptoms of heart failure we always have, but I think I'll at least sleep a teensy bit better tonight.
Thank you so so much for all of the prayers and positive thoughts coming Aberdeen's way. 

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