Tuesday, July 13, 2010

Now in CICU

She is out of surgery and they have transferred her to the cardiac intensive care unit (CICU).  We can't see her until they get her all settled. 

Her surgeon came out to tell us how the surgery went.  He said there were no surprises, which is wonderful.  He said the Fontan procedure itself went according to plan.  But since she has extremely dense scarring adhesions around her heart, he went on ahead and put in atrial pacemaker leads.  I hope I'm getting this medically accurate, as I am not able to google it right now.  But, I'll be close enough.

She already has leads in her ventricles (he put those in during her first heart surgery when she was four days old).  They did that in anticipation of her needing them in the future.  It is fairly common with her heart defect to have the electrical connection between the ventricles and atrium go haywire at some point.  Luckily, so far she hasn't needed the pacemaker.   But, if she does need it in the future, and he didn't put the electrodes in her atrium, then it would require another open heart surgery, and he would have to go through all that dense scarring, which can be risky (the scars bleed a lot).  So, he went on ahead and put them in, just in case.  Which I think is great. 

I forgot to mention that I asked him (yesterday during our meeting) about future heart surgeries.  I told him I am often asked if this will be her last one.  And the answer is that no one knows.  I think it's safe to say that eventually her heart "will run out of gas" (his words) and then she would need a transplant.  But, as far as surgeries to make her own heart better, only time will tell.  I think the odds are in her favor that she won't.  There are a lot of fixes they can do through heart catheterizations, so that's great. 

Back to our conversation today, he said she will need the fenestration (I'll have to explain this better later, as I'm in a hurry, and not at a good computer) to remain open to help keep the pressures down.  So, unfortunately, it could be a year before her oxygen saturation levels start to show an increase.  This makes me sad in that her fingers and toes are already clubbing, and the longer she goes with low sats, the worse it will get.  I know this bothers no one else, but one day it will bother her, and it is a daily reminder for us that her body is essentially oxygen deprived.  Which just makes me hurt. 

However, I am ELATED that there were no surprises and that she appears to have come through the surgery strong as ever.  It is hard to believe that the Fontan has now happened.  It has been hanging over our heads for years and I can't explain what it feels like (albeit only for like an hour) to say that she has officially had the Fontan!

Of course, her surgeon reminded us that the next several hours are critical - it will take a while for her blood to clot and for her circulation to settle in to it's new routine. 

Okay, must run back upstairs to see if we can see her now.  I have been trying to update you for a while, but all the computers were being used and there is not wi-fi in this darn hospital.  So frustrating in the year 2010!!!

Thank you again for all your outpouring of love and support!!!  We are so incredibly grateful!!!
Love,
Christy

13 comments:

Josie said...

Been thinking about you all day ~ glad to hear this good report!!

Oh, and a little bird told me that one of the social workers had several routers installed in the CICU so that the parents can have wireless! Not sure of the accuracy, but check it out : )

Praying for more good news!

Josie

Allie said...

When I grow up, I want to be like Harlie Holton!!!!!!
You did it.

ANewKindOfPerfect said...

Thank heavens!! I am so glad that she got through surgery with no surprises. I hope that her recovery goes as smoothly as possible.

I'm sorry about the saturation issue and the clubbing. That would weigh heavy on my heart as a Mom too, but you are doing all you can do. ((hugs))

Heather said...

you need a YAY button! so glad the procedure is done and she is working on recovery. crossing everything I have that the next couple of hours fly by with no problems.

Janis @ Sneak Peek At Me said...

See I told yo you need a WOOHOO!! reaction button (ya know when you have some time) ;)

I'm so happy she came through the surgery with no surprises AND glad he took a preventive measure.

Rene said...

I've been waiting for this update all day long! Prayers now for an uneventful recovery.

CS said...

So glad there were no surprises and you get to see Harlie soon. Hugs (and your pink hair is awesome)! -Caty (from the trach boards)

Kim said...

Hooray for being post-Fontan! :) Yay for Harlie, yay for you, yay for the entire family. Mad love, and continued good vibes sent your way for the recovery process.

Hugs, my friend!!
Kim

Tanya said...

Great news. I hope that's all you hear from here on out :-). Thank you for the update. Meaghan's asked how the surgery was going several times.

ann said...

So glad things are going great. Harlie must get her strength from you, Christy. Thanks for keeping everyone updated. Been checking all day. Lots of love to all, Ann from California

B-Mama said...

I echo everyone's hoorays--we are cheering over here in Gasperini-Ville!! Yahoo! Fontan--check!! That's gotta feel awesome. Now, onto recovery. We'll be praying for continued smooth sailing with no surprises. Blessings!

Sue Mitchell said...

Awesome news! We will pray for continued good news. Thanks for keeping us updated. Hope you can get some rest.

Ayden said...

Sending you some hugs and prayers that it continues to go as expected. (((HUGS)))