this crazy roller coaster

This crazy roller coaster ride we're on just keeps presenting us with new twists and turns.

When Kev took Livy to the ENT, he forgot to mention her heart problems. SO, when the ENTs office called me to set up surgery, I made sure they were aware of what was going on. They called me back and said before DrH would perform the surgery, we'd need to have Livy's cardio fax a release for surgery to them.

I called the cardio and was told someone would call me back. Several hours went by with no call, so I phoned them. I was told by her nurse that the cardio was reluctant to sign such a release, but wouldn't tell me why. She told me she'd continue to 'work on it' but couldn't promise me a release would be sent.

I called a couple of times yesterday (from my field trip with Ky & Em) and was FINALLY given some information. Apparently, they pulled her chart to give to the cardio for her to review, so she could send the release. In reviewing it, and then asking another specialist to look it over, they came to the conclusion that she's not to have surgery.

For those that don't know/remember Olivia has an intermittent heart block at night. What this means is when she falls into a deep sleep her heart stops working (kind of like sleep apnea) and only when she wakes up (which she does SEVERAL times a night) does her heart return to normal. Obviously, under general anesthesia, she won't have the luxury of waking up when she falls into the heart block.

We were told that specialist, as well as an ENT at Children's in St Louis is reviewing all of her current info (everything from ped, cardio, ENT, etc.) and if they agree the cyst needs to come out, they will only give the OK for a surgeon at Children's to perform the surgery as they're better equipped for what will (not might) happen.

I'm stressed. To. the. max. This was a HUGE concern of mine all along...what happens when she doesn't wake up? Her cardio acted like no big deal, see ya next year, go on with life as normal. Obviously, that's not the case. I just thank God that she hadn't had an emergency before all this came up and I am SO glad I knew that I needed to give them this information.

Please pray for Livy. We don't know what's going to happen. The specialist finally received all of her info right before closing yesterday, so we won't talk to them again until Monday.