Update on Riley. (Pretty good)
Yesterday, she had yet another MRI and the tilt test (miserable test). She's 100% structurally healthy. Full genetic panel came back perfect. No long QT. Not POTS. (Sometimes it looks like lqt, but then it doesn't. Now we know why. Keep reading. Sorry, it's long)
The test normally takes 20-30 minutes. Doctor shut her down at 5 minutes. She never passed out, but the light headedness, loss of breath, etc was immediate. They struggled to get her pulse and BP back. As scary as that was hearing, it's ultimately a good thing. The test was a success.
She is experiencing 3 different types of PVC. (Still don't know why. The entire Ohio State, Cincinnati, Dayton cardio depts are consulting...and the head of Johns Hopkins, who happens to be one of her doctor's best friends.)
She also has (I can't renember the actual term. Docs, feel free to help me out) a very strong fainting reflex. Even when her heart is beating normally.
She's 5'10"/138lbs. She's tall, but tiny. Basically, if you took me and stretched me almost to my husband's height, you have Riley. So, in addition to everything else, she's prescribed multiple small meals and snacks throughout the day loaded with protein and salt. Lots of it.
So..her Dr (love him. Great doctor. Great man. And he's determined to figure this out. He called me as I was on my way back to the hospital to discuss what he discussed with Riley. He didn't realize I had been there with her and had scrubbed in for another surgery and wanted to make sure I was completely informed instead of expecting her to renember everything) decided he wanted to start her on a new medication to try to control the PVCs, which meant SURPRISE!!! she got admitted to monitor tolerance and response. As there was no way I was going to leave her there alone, it was a fun back and forth from Cbus to Dayton and back (after driving up at 6:30 yesterday morning).
She'll wear a heart monitor for the next month (again) and we'll go from there.
We got home about an hour ago. She's fine. Actually better than she has been. Her heart monitor isn't doing the crazy jumps and her ekg is starting to settle out. Still not perfect (It's only been 4 doses) but noticably better.
Next appt is June 1 to go over the results with the heart monitor/meds. If this looks good, he wants her to continue the meds for a year and then he wants to talk about mapping the PVCs and ablation vs managing with medication. As nobody can figure out why she's having so many/kinds of PVCs the conversation changes a bit. There's a chance others would pop up and we would wind up 'chasing' PVCs. And there is a small risk of serious complication or death, About 1%. But if you're in that 1%, it's 100%.
And,if, going down the road she wants other consults, he'll get her in wherever she wants to go.
Unexpectedly long couple of days, but at least we're finally getting somewhere. She's tired, but better than I've seen her in quite a while. Her eyes look better. (I've always been able to look at her eyes and know when she's stressed or sick)
We're leaving Friday morning for the Masters and for the first time in 3 years, I don't have anxiety about being more than an hour away from her. I'm sure she'll appreciate me not blowing up her phone.
I sincerely want to thank you all so much. There are more than a few here that have 'watched' my kids grow up (because I'm annoying like that). She knows I post her updates. And she says 'thank you', too.
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