Not a dull moment...

Where to start? I got a call tonight from Harlie's cardiologist in DC. I could tell immediately that something was amiss.

Basically, they had a conference this afternoon to discuss this week's cases. They went over all the data on Harlie (her last two heart caths - August 2008 and last week's - her last two echos - a few months ago and I don't remember when). In short, the images do not answer their concerns, and they need more info before going in for surgery.

A long time ago - I don't remember when, they discovered that Harlie also has subaortic stenosis. Note: if you check out the link about subaortic stenosis the picture of the heart is definitely NOT Harlie's. Her's is all crazy. Anyway, it's my understanding that they need to know more about the degree and severity of her stenosis before going in for surgery so they can fix it while he's in there, or not, depending on how bad it is. Doing the Fontan as scheduled without fixing the stenosis if it needs it, would be bad. Very bad. So, no argument from me! Do what you gotta do to give Harlie the best results possible.

So, we will leave Wednesday night (instead of Tuesday night) and on Thursday she will have another heart cath (her 5th) (I think they want to try to get access through her subclavian vein since the doctor couldn't for her most recent heart cath) and they will do a transesophageal echocardiogram or TEE for short. Instead of doing the ultrasound on top of her chest, they will do it by putting the instrument down her esophagus so they can see the heart without the bone, etc. in the way.

Hopefully between these two procedures they will have the information they need to make a decision - and fast. The doctor said that she would see if the surgeon would then be willing to do the surgery on Friday or early next week. I suppose there is a possibility that the information could tell them to wait to do the surgery altogether - but I'm thinking that would be worst case (and I'm not going to think about that).

At first when she called, I was afraid that something happened with scheduling, or the surgeon and my heart was in my chest waiting for her to explain what was going on. But to find out that the surgery is being postponed because of a questionable issue with her heart just makes me sick. I am just going to assume that she isn't sugar-coating it by telling me that the images aren't clear. Regardless, they are going to do more studies to get the answer and we'll know on Thursday.

I guess it buys us another day to pack and get everything together, although now I have no idea if we're coming home on Friday or well, when? Eh, details, schmetails. I live life by the seat of my pants. Plans? Who needs plans? I don't need no stinkin' plans!

Have a good night!
~Christy