Pre-Op Day

What a long day! And a crummy day for traveling to DC! Heavy traffic and it rained the whole way.

Anyway, we did the normal thing, blood work, chest x-rays (I loved the woman who did Harlie's x-rays - she was the supervisor and she was so sweet to Harlie, calling her a special little girl and gave her a Barbie doll. Now how nice is that?) met with anesthesia, and the surgeon.

We also met a woman who was doing some sort of study on cilia dysfunction (cilia cells line the air passages of your lungs and airways). She said that they are doing research to see if there is a connection between this cilia dysfunction and congenital heart disease. I don't know that I completely see the point (by the time you find out you're pregnant, the heart is pretty much formed - and in the case of congenital heart defects, such as Harlie's, the defect is already there). Anyway, she said that if you have this cilia dysfunction, it's good to know because the patient may need to be treated for it with breathing treatments, medication, etc. I went on ahead and agreed to the study because they aren't going to do anything invasive to Harlie. They just collected some blood during her blood draw at the lab today and then they take a swab from her mouth and nose on Monday.

Now on to the important stuff:

I met with the surgeon today to sign the consent for surgery. I really thought it would take just a few minutes since I didn't have any questions. But we got new information that changed that. Back in this post I explained what her defects are and what surgeries she's getting. The two surgeries that she needs are the Fontan and the Damus-Kaye-Stansel Procedure (DKS).

The DKS is more of a priority because it will help alleviate the high pressures caused by her sub aortic stenosis (which makes her heart work harder to push the blood out of her heart and to her body, instead of it flowing easily). The "bottle necking" of the blood causes high pressures with a domino effect through the rest of her system. The higher the pressures, the more risky the Fontan (which is a major circulatory change for her body).

Today, he said that he might not be able to perform both surgical procedures on Monday. He is going to do the DKS first and see how things look, and if he thinks he can do the Fontan, he will. If he feels that doing the Fontan will be too much for her, he will close her up and we will have to come back for the Fontan in a year or so.

He said that these procedures are two major surgeries and just might be too much for her body to handle at one time. Clearly, we don't want any extra risks, as there are plenty anyway. But I can't help but be disappointed that we might not have the Fontan behind us after all. I don't like the idea of it hanging over our heads for another whole year. But, I also don't like the thought of asking too much of her body and the risks that go along with that.

So, at this point, I have no idea what will happen. I guess while she's in surgery, someone would page us to tell us if he has started the Fontan, or if they are wrapping things up.

I can't help but wish that everything wasn't so complicated. Can't just one of her defects be a standard, run of the mill, textbook defect?

Well, that's it for tonight. Now to have a fun filled weekend before heading back to DC on Sunday night.