Charlotte had a slew of tests yesterday. They must have thought this was something serious, because I've never seen so much work done over a weekend. Ever.
Saturday started off with an ENT consult and a scope. Nothing like a camera being pushed down your throat to say "Good Morning", right? The ENT said that Charlotte's left vocal cord is actually moving! Not as much as the right, and not a significant amount, but the fact that there is movement at all is real progress. Doesn't tell us anything about her "event" (as we like to call it) but interesting nonetheless. The other thing the ENT saw was that Charlotte's throat still has a pretty hefty amount of inflammation and irritation from reflux. Remember that nissen fundoplication? Yeah, it was supposed to stop that whole "reflux burning up her throat" thing. So we now have a whole other question to deal with-- what to do about her reflux. I'll come back to that.
CA also saw cardiology and had an EKG. Luckily, the cardiologist believes that her event is not a cardiac problem. Yay for that!
She saw Neurology as well and they, too, believe that Charlotte's problems are stemming from reflux, not seizures. Phew.
Currently, we, as well as the team of doctors, believe that the event stemmed from some silent reflux, which resulted in a vagal spasm which slowed down the heart rate, which lead to the oxygen desaturation. Makes sense? Yeah, I didn't think so.
Anyway, we're being moved to the ICS floor, her "home" at CHOP. When she was admitted, they didn't have any rooms on that floor, but today one opened up and Charlotte is stealing it. Once on ICS, we'll discuss with her doctors where we go from here. One option is a J-tube, another is changing medications, and another yet is re-doing the nissen.
We got a lot of results today, but not so many answers. So it looks like we'll be here for another day, at least.
Thanks for your love and support. Charlotte says "hello!"
So glad to hear she Charlotte is OK! And good that they are investigating to get to the bottom of it - hopefully you will get answers, eventually. And by the way, I once rushed D to the ER because of a vagal. It was soon after her heart surgery, and she was trying to poop. It was probably a combo of the pain on the incision, and some reflux, but she turned blue and her sats dove down. We felt just a bit foolish when we got to the hospital and she seemed absolutely fine. Oh well.
ReplyDeleteYAY on the vocal cord movement-- if you are like us, sometimes the small celebrations get forgotten in the whirlwind of things that aren't going so great. I continue to hope that you get some answers and are home very very soon.
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