Friday, December 13, 2013

Booty waggle time!!!

Precious Village, please join Grace (and the rest of us, of course :-) in doing the happy dance (also known as the "booty waggle" in our house) as you sing this Psalm!!!

Psalm 150

Praise the Lord.[a]
Praise God in his sanctuary;

    praise him in his mighty heavens.
Praise him for his acts of power;
    praise him for his surpassing greatness.
Praise him with the sounding of the trumpet,
    praise him with the harp and lyre,
praise him with timbrel and dancing,
    praise him with the strings and pipe,
praise him with the clash of cymbals,
    praise him with resounding cymbals.

Let everything that has breath praise the Lord.
Praise the Lord.

Grace had her SUPER DUPER important echo this morning and the results are nothing short of AWESOME!  There was no gradient, no regurgitation, her pressures all looked good, and the left side of her heart (remember, this is the side that was so small that TCH wanted to write it off all together) is about the same size as the right side of her heart!  Grace's Cardiologist said that Dr. Pigula (Grace's surgeon) "couldn't have done a more perfect job in the placement of the valve."  He also said that besides the fact that Grace will need future valve replacements (as she outgrows the valves), her heart is otherwise healthy now.  What?!?!  I have never heard the word "healthy heart" in reference to our little Gracie Doo.  We have always known that having a valve replacement guarantees that Grace will need future replacements and since she has the melody valve now, as she grows, they will need to balloon the valve to make it larger (via heart catheter).  These details ensure that we will spend a good bit of time throughout Gracie's life going back and forth to Boston, but that is a small price to pay for the gift of a happy heart! PRAISE AND GLORY BE TO THE LORD!!!

Grace still has a couple of hurdles that she still needs to clear before being discharged, so we would greatly appreciate your continued prayers.  They have started Grace on pediasure, instead of the nasty formula that she had to be on because of the side effect (called chylous effusions) that she had after her surgery in November.  While Grace LOVES the pediasure (and I love it because it's 30 calories per ounce, which is 10 more calories per ounce than normal formula), she did vomit a good bit of it up today.  The concern would be that the side effect that I mentioned has not completely resolved and will be something that needs to be managed with the nasty formula again and monitoring for increased fluid build up.  We are hoping that it was just due to the fact that Grace had a good bit of sedation today (one of which has an alcohol base in it) for her echo, so as her nurse practitioner put it "it's like taking a bunch of shots and then drinking milk,"  (meaning it's a lot on ones tummy).  I had to read that text from David a couple of times because I couldn't picture how "getting shots" would be complicated by drinking milk.  As you can tell, my mind lives in the medical realm because it was a few minutes later that I realized "oh!  she meant shots of alcohol that you would take at a bar…  I get it!"  Also, Grace's platelet count was low, so they may have to give her platelets.  They said that it isn't terribly uncommon for patients with a new valve replacement, but they are keeping a close eye on it.  Will you please pray specifically that her vomiting stops, her chest x-ray looks great, her platelets rebound with out any intervention needed, and that we can get on and stay on the Divinely designed monorail instead of the Divinely designed roller coaster we've been on for 2 months straight?

The silliness and sweetness that gets me through each day...
I got to spend time with Abby at her Polar Express event this morning at school…

Sorry this picture is blurry, but it is a small glimpse of Andrew's magical smile...

Thank you for your faithful and fervent prayers!  Y'all are the best!  

1 comment:

The Keierleber Family said...

I am blown away and so thankful to Jesus on y'all's behalf!

Y'all definitely need to share all of this with her cardiologist at TCH.

It is one thing to be ignorant. I mean, Boston is #1 so for them to know more than TCH should be expected, and nothing should be held against TCH for this necessarily.

BUT for TCH to make you feel like you did the wrong thing. NO. They need to be set straight. They need to know to RECCOMEND Boston when they see cases like Grace's and not just write them off as a lost cause. If they must, they can say, "it is a long shot, but try Boston." That is fine, but what they did to y'all is just wrong!

Because of my advocacy of Annie, I will be running half marathons, (possibly marathons depending on how I feel running the half! lol). My first will be the half marathon in Boston, October 2014. If that goes well, I plan to return to Boston yearly to run that and/or the May half marathon. Who knows, maybe one day the full marathon in April. ;)

Bottom line, hopefully in the future our paths will cross in Boston sometime! :) And for sure they will cross in Houston! It kills me that I still haven't been able to hold Grace!