"Hi, is this Philip?"
"Yes, hi doctor, thanks for getting back to me."
"Sure, sure, how are you?"
"I don’t know; how am I?"
The news is that there is no news. "I guess you’re just abnormally normal because everything came back fine. We’re just waiting on one test that doesn’t come back for another 24-48 hours. Electron Microscopy."
It’s wonderful news, but still. I mean, I’m thrilled there was no bad news, I am. But to find nothing? I mean, he was in A-fib with complete heart block and very low velocity on his heart scans, etc. It makes no sense. What caused all this? Nothing? And there’s the matter of Phil’s father, who died of heart complications at age thirty-two. They just didn’t know then what they do now… and even now, they’re still learning so much. I still can’t help but be nervous about my children, too.
We’re waiting for electron microscopy results, still, and Phil has more doctor appointments and still cannot use his arm much. Can’t lift the kids for a month, at least, but it doesn’t stop the monsters from crawling all over their abnormally normal papa. I brought up to the doctor the possibility of "Desmin myopathy," randomly really, but the doctor said no stains were done because all the biopsies came back normal, so nothing more was needed. All his blood work came back fine too. They did a 24 hr. urine collection, and he’s not leaking proteins, all normal. I’m at a good hmph, and don’t know whether to just leave it alone or to continue (reasonably) until we get an answer or some kind of explanation that makes a modicum of sense. We at least, in the words of a friend (who’s also a cardiologist) need someone to prove to us that he DOESN’T have a cardiomyopathy.
Obviously, we’re not looking to do anything super invasive unless it’s absolutely necessary, which it doesn’t seem to be right now. Not today. Not this weekend. But more testing does have to be done. It’s confusing, but maybe, like with what happened to Lucas, we might never know. Still, Phil has a pacemaker and follow up appointments, but it feels like there might be some celebratory rose wine in our future. At least for tonight. Thank you again, to everyone, for all your comments, emails, thoughts, and quite frankly, for being here with me through it. I cannot thank you enough. I’ll post the follow-up (deep within the cells themselves) results in the next 48 hours when we get ’em. Then we’ll work on figuring out the next steps in all of this, including genetic testing, aside from monitoring Phil’s heart very closely over the next few months and years.
