Stress

I think I'm suffering from pre and post traumatic stress disorders.

Ever since her heart cath on Tuesday - when I knew that her surgery date would be April 16th (barring any unforeseen obstacles) I have started to lose my mind.

Looking back on the last two and a half to three years, we've really been through the ringer. And I am pretty proud of the way we've handled things, all things considered. For the most part, I've managed to stay positive and not let things get me too stressed out. But I gotta admit, I'm stressed. REALLY stressed. And mad. Well, not mad at this exact moment. But I was. Most of last week. I was mad. At everything. And at nothing. But, I'll have to talk about that when I'm mad again. It's hard to talk about being mad when you're not currently mad. Well, at least for me it is. And most of the time I try not to show that side of me on here. But I have a feeling that's going to change in the next few weeks...

Anyway, I'll talk about being stressed. Because right about now, that's a given. And I'm guessing I'm going to stay that way for a while. I'm thinking that if I just accept it as a fact, and not try to fight it or hide it, I'll be better off.

Here's what I'm stressed out about (in no particular order):

1. The long days at the hospital. The fluorescent lights. The people. The food. The restrooms. The beeping. The #$!%$#@$! beeping. The same questions over and over. The same answers over and over.

2. The 3am blood draws (yes, she's sleeping soundly, and then BAM - bright lights right in her eyes) the tourniquet, the holding her down and then the sticks. Oh, the sticks!

3. Chest tubes. Everywhere.

4. Not being able to hold her or comfort her. At least for a while anyway.

5. Restless sleep - for her and for me.

6. Missing my family. Missing a "first" of Cooper's. Missing my friends. Missing my life at home.

7. Not knowing how long we'll be there.

8. Tom's birthday (April 28th). Murphy's birthday (May 11th).

9. The sticks. Did I mention the sticks?

10. Not being able to leave her side - comfortably. Not being able to run (although I'm going to try).

I could go on, but I won't.

Her surgery is on April 16th. I'm guessing the average length of stay for this surgery is about 2 weeks. However, based on Harlie's history, I cannot assume that the average would apply to her.

In order to truly understand why I say I'm suffering from pre and post traumatic stress disorder you have to know a little bit of history:

Her 2nd heart surgery was the Glenn, when she was 6 months old. She was in the hospital for 10 days. She was home for 10 days then went into respiratory distress and 911 was called from her pediatrician's office. She stayed in the hospital for an additional 8 WEEKS. That's a grand total of 3 months!

The reason she went into respiratory distress is because she developed a chylothorax due to the surgery. During surgery, her lymphatic vessels (carries the fat from your diet into your blood stream) were damaged, which caused fat to leak into her chest cavity, making it difficult for her lungs to inflate. A drain tube was placed in her chest to allow the fat to drain out and we put her on a no fat diet and waited for the vessels to scar down, heal, and stop leaking. The healing time is different for every patient, and there is no way to predict how long the healing process will take. It could take anywhere from days to months. Really.

It is my understanding that if a chylothorax developed after the Glenn, there is a good chance that it will develop after the Fontan. During the Fontan, more "work" is done in the area of the lymphatics, increasing the chances of damage.

Since they didn't know she had this complication after the Glenn, we got to bring her home. So, she was here in Richmond for the 8 week hospital stay. However, since they leave the drain tube in to watch for a chylothorax, if it does develop, we will be in DC. So, we will have to see how the team there deals with this complication. And see if we can get her transferred here to MCV while she's healing.

I know it must sound as if I'm being negative. But, I am simply preparing for the worst, and hoping for the best. And I'm stressed. Who wouldn't be?

If I had known at the beginning of her last heart surgery what was in store for us, I never would have believed we could do it. It would have been too overwhelming. But with each new day, there was a new opportunity for the healing to happen that day. Every day, we started out the day by looking at how much drained during the night. Hopeful that it was less than the night before. And it really is a true belief - there have been studies - about children suffering from PTSD after having spent a substantial amount of time in an intensive care unit.

She has no idea what's in store for her. I suppose that's a good thing. But it still makes me hurt inside. I know things will be better for her after this surgery. And I know that miracles happen, and perhaps no complications will occur. But, I am still not looking forward the experience.