So after reaching out to other Boston heart moms on FB who emailed and called and texted their cardiologists at BCH within 24 hours the cardiologist called us.
He said Macsen's heart is beating out of synch - disynchrony. Instead of starting the beat at the top and squeezing down the heart to have an efficient pump, his is beating erratically. He is still in heart block months after being on the digoxin. So Boston wants us to come up for a cath - Macsen's 2nd this year- and if the electrophysiology study goes well they will perform another open heart surgery, (#4) on my little man to place a pacemaker - something called CRT (cardiac resynchronization therapy.) He is too small to have it placed via cath or small incision.
His CHOP team doesn't do CRT in single ventricle children and they think we need to list him for transplant - that his heart is just done. But his cardiologist there is doing more research - reaching out to her contacts at other centers that use CRT. There is very little published research on it and even the Boston team keeps urging me not to "get my hopes up." They tell me "sometimes it's a homerun" and sometimes it doesn't help at all. If it was all for nothing that would be devastating after putting him through the trauma of another surgery - he's older now. He will remember this one. But if there's a chance it will let his heart function better and keep him off the transplant list a while longer is it worth the risk?
We are now waiting for scheduling to contact us with the date for the cath. I pray this pacemaker is the answer to our prayers.
Macsen is still his funny, smart little self. Today he wore his cowboy boots and Woody cowboy hat with his Lightning McQueen shorts and shirt to his sisters awards day at school. He makes me smile all day long.
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