Wednesday, November 6, 2013

Garden Gnomes & Doctor Visits

I wondered what Naya would think of seeing people walking the streets in costume. It's funny when you realize how hard it is to explain American events to someone who has no idea about them. It makes us sound a little insane. "Yes, I'm going to dress you up in a costume, and you'll walk around on the streets asking for candy. And then next month we're going to bring a tree into our house and put shiny things all over it, and stick socks that are too big for anyone to the wall." In any case she really had fun going to a church harvest festival, and going to get candy from a couple people in the neighborhood. And I had to dress up as a peacock too....I usually start planning my costume a year in advance, I just love dressing up. I can't stop.



Doctor Stuff.
After another echocardiogram and cardiac catheterization, I met with Naya's cardiac surgeon at Rady's last month. We discussed the conclusions their team has come to, and all the risks and benefits of several possibilities for me to consider. Her diagnosis is mitral atresia with double outlet right ventricle, moderately hypoplastic left ventricle, with multiple ventricular septal defects.  A mouthful of words that I've slowly figured out the meaning of. 

The doctors have decided that she will have one surgery, a Fontan, versus breaking it into two separate surgeries with the same outcome.  The question is when.  At the moment Naya's heart is pumping twice as hard as a healthy heart, because one ventricle (versus 2) is pumping to both the lungs and the body.  So while she doesn't have any other symptoms, and seems generally healthy, the work load will take a toll on her heart over time.  If we wait, it may wear her heart out.  

The downside of performing the surgery now is that as it is not a long term 'fix' for her condition, it brings along eventual side effects, needs for medication, and other potential serious problems.  It sucks to start the clock on those things, when she's living as such a healthy child right now.

What it comes down to is no obvious right answer, but it seems that the best choice is for her to have her surgery in the near future, and take the work load off of her heart.  We're going to talk again after the holidays, but are tentatively planning for her open heart surgery in February of 2014.

So please keep Naya, her doctors, and myself in your prayers for wisdom and direction.  It can be hard to think about the difficulties she may have ahead of her, but God has truly given me a peace, and a belief that she is going to be okay. For a long, long time. 

I'm claiming this one for Naya,
"Because you love me, I will rescue you.
    I will protect you because you know my name.
When you call to me, I will answer you.
    I will be with you when you are in trouble.
    I will save you and honor you.
I will satisfy you with a long life.
    I will show you how I will save you."
Psalm 91:14-16
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And now, a moment of silence for my high heels of Halloween costumes past. This was my first year for flats...it felt like somewhat of a betrayal to who I am.  But to be honest it is probably time, I abused my feet for the last 15 years, and they deserve a retirement.


2 comments:

  1. You know what's crazy.....God has blessed Naya with such an amazing mom and she is such a beautiful, amazing little girl who is smart and funny....that I forget sometimes how fragile her heart is and what a massive burden you are carrying. I love you friend, and thank you for sharing your journey so that we know how to pray. We are here for you!

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    1. Thank you Cindy...that is true for me too, I don't think of her special needs most of the time, thanks to God's peace! I'm so thankful for you & everybody that holds us up. XOX

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