relax?

It's so easy to say 'relax', 'have faith', 'it will all be ok'. Easy words for me to say to myself. Easy words for others to say to me. Easy words. Easy to say, hard to believe and trust.

I was just starting to come to grips with this surgery. I was starting to feel peace, have faith. Now, I'm back to square one.

Turns out, all our rushing around and following dr's orders to get her clearance for surgery tomorrow was all for nothing.

Originally, Olivia was seeing an ENT in Springfield. When they scheduled her surgery they said we'd need clearance from her cardio. The cardio REFUSED! She said they only way she'd clear her was for the surgery to be at Children's in StL AND for her to have an acceptable reading from the Holter heart monitor.

So, we had our appt Tues. Got her put on the Holter, took it off of her a bit early yesterday, scheduled an 'extremely urgent' pick up from FedEx (per dr's request), got the monitor sent out, and it was received by the dr's office at 8:25 this morning! Plenty of time for them to get it and read the results.

This afternoon I get a call from the surgery center, giving me her surgery time and asking me to follow up with cardiology as that was all they were waiting on to make it final. I call the cardio and was told her nurse JUST faxed over a clearance for surgery. I asked if this meant the Holter reading was acceptable then and I STILL can't believe what I was told!!

The monitor apparently sat there all morning, so now at almost 2:30pm it's too late to get it entered in the computer and have the results read. They won't know the results until tomorrow afternoon. BUT, they cleared her for surgery any way! The whole reason this surgery was delayed and now, we have nothing. We were told they needed to know more info on her heart block so that the surgeon was prepared once she was under general. NOW, the cardio nurse says that the Holter was NEVER required for a surgical release, it was just something the cardio 'wanted to do'. Hmmm, yeah. Cover that butt just a little bit more.

I'm so frustrated. But, more than being frustrated I am terrified. I'm scared for my baby girl, but I can't let her see or know. I don't know HOW to believe it's going to be ok. I'm really trying, but I don't think anyone can understand. Knowing that your child is going into surgery (a surgery that HAS to be done) with a high risk of having complications from a heart condition and there is nothing you can do. I thought in the beginning, at least the surgeon would be prepared. They'd know exactly what they are facing with her heart block. I called the ENTs office and they received the clearance, so as far as they were concerned that meant the cardio read the Holter and everything was ok. NICE!

I don't know what to do. I don't know how to stop panicking.

UPDATE: While typing this the ENTs wonderful nurse returned my blubbering phone message. She spoke to the Surgery Center nurse, who pulled Livy's chart and told her the cardio's notes stated she'd never denied surgical release, that everything was fine & the Holter was unnecessary because Olivia was currently asymptomatic. I informed her that this was NOT the case AND informed her she IS symptomatic as she still wakes several times a night due to the block. So, she told me to call the Surgery Center and tell them exactly what I told her. I've been trying to do that, but for 10min now the phone has been busy. UGH!

If you've read this entire train wreck, you must REALLY love me! Bless your heart.