Major Snag with Surgery

Today sucked. We drove to Norfolk, met with Dr. Magee and Dr. Dilustro (neurosurgeon doing the harvesting of the bone from her skull). All was good. Went downstairs to surgery to meet with anesthesia.

And that's when things went downhill.

We met with an anesthesiologist - and was told that he would not be the one that has her case for tomorrow. No biggie. That's normal. After going over her history, the anesthesiologist said the Chief of Anesthesia has her case and that he would call him to give him a "heads up." I jokingly said, "You mean warn him?"

He was gone for a long while.

He came back and said that the Chief did not feel comfortable being on her case. He said she needs a cardiac anesthesiologist. Well, DUH! Frankly, I didn't even know that CHKD had cardiac anesthesiologists. And the last time she had this surgery there, it wasn't mentioned and her anes was fine with her. But now they want one and he didn't know if one was available. I asked how we can find out if one is available (it was getting late in the afternoon by this point). He said that he needed to call and see if he had left yet. Plus, they wanted a copy of her most current echocardiogram (which was in August). In fact, he asked me if we had it with us. Sure, it's right here in my back pocket. NOT! Then - he KEPT TALKING! HELLO! Stop talking and starting dialing! So, I interrupted him and told him to go get on the phone already! UGH! While he was doing that, Tom jumped on the phone to call her cardiologist in Richmond to have them fax down her echo report.

When Tom came back, he started to get really mad. But I told him to calm down, let's not worry yet. If one is available - then we're in and all will be okay.

So, now it is getting really late and we're still supposed to go get lab work done so they'll have blood ready just in case. The surgery area is now completely empty - we're the only people in there - not one employee (well, except for the poor anes who had to deal with us). I tried to overhear his conversation - but couldn't. While waiting, I ran back up to the 5th floor and found Karen (Dr. Magee's coordinator) and gave her a heads up that something was amiss. Then I run back downstairs.

He finally comes out and says - in not so many words - that yes, a cardiac anes is available, however he is not comfortable, either. WHAT?!?!?!?!!?!?!?! I had to say, "Are you telling me her surgery is cancelled?"

"Yes."

Now I AM MAD. HOPPING MAD. MORE MAD THAN I'VE BEEN IN A LONG TIME.

"He wants a new echo, more information and he wants to meet her."

Okay, fine, tell him to call her cardiologist, come here now, or get here early in the morning, meet her, do the echo and problems solved.

No, he can't come now, and the echo's are all booked up in the morning on other cases.

Then pull an echo off another case.

Silence.

I don't remember exactly the correct order of all that was said, but this is a summary of what I said...

It is so unprofessional for them to make this decision and not ask to talk to me on the phone. They had this guy, who had nothing to do with her case, come and relay the message. I've been around the block. I'm seasoned. I'm her mom. This is major surgery - a huge big deal to cancel - and I deserve to talk to the guy making this decision. They need to put their heads together and come up with solutions. Think out of the box and TRY HARDER!!!!

I WAS PISSED.

At one point - and I can't remember exactly when it was said (and it was said more than once) "Well, we don't want to kill her."

Well, THAT'S professional. He kept saying that after they "cut her open her heart rate could go sky high." I really can't believe we had that conversation.

After I let my feelings be well known, I went to get our stuff. I took the paperwork for the blood work and balled it up and threw it on the floor. Oh, that is so not like me. But, like I said, I was PISSED.

He followed me and said he would try again.

Again, he was gone for a long time. This whole time Harlie is just playing, being so darn good. It makes me so sad that all this is happening and she doesn't know. I know that's better than her knowing. But, it still makes me sad. And, honestly, I am very glad that the circumstances aren't so that Harlie can understand what's going on. Because if she understood his wonderful, "Well, we don't want to kill her" statement, I would have his head.

While he was gone, I called her Richmond cardiologist. He told me that he's had trouble with this facility before. Which is so not comforting. And - even with major trouble - they never once picked up the phone to call him. Which, of course, I offered to get one of her cardiologists on the phone. I mean, if you're a cardiac anes, and you want more info on a patient's heart condition, wouldn't you call her um, hold on, let me think now.... oh yea, her CARDIOLOGIST?!?!?

Well, in the meantime, Dr. Magee has called and spoken with this dude. From what I hear, he said they better get their stuff in gear, because this surgery WILL happen tomorrow. I was told he was pissed, too.

The dude comes back out and says that it is possible it could still happen tomorrow. Luckily Dr. Magee only has one other case tomorrow, so they are switching places and letting him go first in order to buy them time to get the information they want to feel more comfortable with Harlie.

So, instead of being there at 5:30am, we will get there at 7am. She will be given some Versed to make her feel very relaxed and then they will do an echo. And they will call her DC cardiologist to get the operative notes from her last heart surgery.

Tom says that he thinks it's a long shot that surgery will happen tomorrow. I'm trying to be more positive. But, I do agree that I need to prepare to walk out of there tomorrow and go home.

Here are my problems with this whole situation:

1. As a parent, I need to feel completely comfortable and confident in the people that are taking care of my child in a dangerous situation. I need to feel good about her surgeons, and their abilities. And I need to feel good about the guy who is keeping her alive and properly sedated during surgery. The latter, not so much.

2. Do I push it or do I run? While running wouldn't be a hard thing to do (meaning I dread this surgery and the recovery) it MUST happen in order for us to move forward. The decision to do this surgery is not a choice - it is a necessity. And running would just be putting off the inevitable. And, well, we haven't run from anything yet so far, so why start now?

3. Do I really have a child that is THAT scary of a patient? Is she THAT risky? Because this is number - oh, I've lost count - 12, 14? And we are not done. I cannot begin to think that way. I will go crazy and I will be of no use to her if I become that scared.

I tried to explain that to him. If every time we were afraid of the "what ifs" and didn't go forward, she wouldn't be here today. Living afraid is not an option for us.

Do you know what his response to that was? "Well, it could be that 14th time that something goes wrong."

Nice.

Honestly, I try not to judge. But c'mon!!! These are the guys that are supposed to be making me feel better. They are the ones that should have some confidence. This guy was young and an idiot. And I remember his name.

Well, it is late and I still have some e-mails to send. I'll update as soon as I can.

Thanks for all your well wishes. Please keep us in your thoughts and prayers that the right thing happens tomorrow and that all will be okay.

Thanks,
Christy