Friday, April 3, 2009


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.


Kim said...

Emergency drinks are required. When can I steal you away? Get the kids to bed and plan on meeting me out. Make sure Brandy is available the following AM.

I'm sorry. There are no words to comfort you. It is unbearable, I imagine, to KNOW what you're going into this time around. I feel for you as much as I do for Harlie.

I will come and visit you. Promise. And I'll sneak in bad things (brownies, alcohol, you know, necessities in the PICU).

Oh, and run, baby, run! The endorphins will help, too. BIG HUGS!!!

Donna said...

I would REALLY believe you were Super Woman if you were not stressed, how could you not be?!? You guys are amazing, I'm in total awe of you, your organization skills, your ability to juggle a million things, your calmness, and your ability to find humor in almost everything. Speaking of which, your mad paragraph made me laugh!
I know nothing I say can change how you are feeling, but just know I'm here if you need ANYTHING...

Anonymous said...

Honey, you were mad? I didn't even notice.

Some how, some way, we manage to continue on this bittersweet journey. I can't imagine taking it without you.



Lindsay said...

I won't at all pretend for one moment to be able to comprehend all that you must be going through in your head, but I will say that from the outside looking in that you have your *#%t together. You're a great advocate for Harlie and leader for the whole family. As always, if there is anything we can do to make things more manageable at home while you're away, you know where to find us.

Susan said...

On this journey Christy you can't always be "up". And if you are I want a prescription for whatever drugs you're on. Hugs.

Sue Mitchell said...

You're bound to be stressed! You know too much now and that's not always a good thing. But you're allowed to be stressed. That's the purpose of being able to "blog" among friends, right? None of us can know what you're going through but you can know we're plugging for you and Harlie and the rest of the family. Hang in there - we're praying for you and cheering you on!

Ann said...

Ditto what Susan said. Many {{{hugs}}} being sent your way.


Suzanne said...

AAAAH. Christy. What a journey you've been on. Your perspective is amazing. Your strength is amazing and I truly believe that sometimes strength is derived from hitting the bottom. If Harlie ends up being half the woman you are she will do just fine!

I can't believe it is here . . . next week. We will be right there with you in spirit.


Rene said...

I can say I know what you are feeling. There's no predictor for heart surgery. I wish I could mail you a hug right now.

I am so scared and excited for you both right now. This is it! It's almost here and in a few more weeks, it will be OVER. Harlie will back to her old self, but better because her oxygen will be improved.

Heart Hugs!
Rene Dereksen
Tommy's mom

Grandma said...

Christy, you and Tom have been thru an incredible journey over the last few years. You have been up and down so many times, I often wonder how you can do it. But then I realize that Harlie was given two of the most wonderful parents in the world, a mommy and daddy that can handle the ups and downs..which gives her the strength to go on and deal with yet another surgery, more hospitals and more doctors knowing that when all is done..mommy and daddy are there to help her heal and give her that extra boost to go on. You have every right to be stressed, afraid and down right scared but as I have always said..but your faith in God..He has been there for every road harlie and you have been on and He will be there again. You have us, your familiy..all your friends and people that you don't even know praying for a safe and speedy recovery, for you and Tom to have the strength to continue to go on,
and those prayers are never going to stop. Take a minute, say a prayer and feel all the love that is around you and you will be OK. Love Grandma

windy toy said...

I agree with grandma, I've never met you guys, but I always pray for your family and Im always checking in to see how your doing, so you have ALOT of people that care and love you, some that might not even know you:)

Sue Mitchell said...

Just a quick note - I finally had a chance to view the 2008 Montage and it was wonderful to see the progress Harlie has made in a year. I know it was time consuming but thanks for putting that together and giving us the neat capsule on all 3 kids.

Tracy said...

That is interesting. I know lately I've been feeling my own PTS. I too think the past 2 1/2 yrs have finally caught up to me as well. I'm glad to hear though that I'm not the only one.
Its interesting to see that this is something that is "common" among VACTERL families.

Will you guys be going to the VACTERL Conference at the end of June? Right there in itself is great therpy. Literally.