Monday, November 25, 2013

And the plan is…. to wait some more

This is David - Thank you for praying for Grace's echo today.  The pressures in the right side of her heart are high and the gradient across her mitral valve was between 14-18.  Grace remained consistent and it took a lot of sedation to knock her out.  So the gradient was 18 when she was sleepy, but still wiggling and needing to be restrained a little bit.  After an hour, and lots of extra doses of sedation, Grace finally knocked out and her gradient was down to 14.  The last echo that Grace had was roughly 9 or 10 days ago and her gradient was between 11-13, so it has certainly gone up.  Our cardiologist, Dr. Marx, stated that in his discussion with our surgeon, Dr. Pigula, they sort of had differing opinions as to what should be the next step.  Basically, Dr. Marx feels like her valve is demonstrating that it needs to be replaced and Dr. Pigula would like to wait another week and reassess to see if they can control her heart rate with medication and then see if her gradient will stay lower with a lower heart rate.  A big part of Dr. Pigula's reasoning is based upon how Grace has looked clinically over the last 3 or 4 days.  Grace has made major improvements and when Dr. Pigula came to see her this morning she was sitting up in the crib on her own and smiling and waving at people, she was not on any oxygen, she was almost completely off all of her sedation, and she has been eating by mouth.  Believe me, we want Grace to be doing well clinically, but the difficulty is that Grace tends to do well clinically up until the last minute.  Even when we were in Texas, after Grace had been admitted to the hospital, she had been smiling and waving at the attending doctor fifteen minutes prior to turning blue and having the crash cart pulled out for her.  It seems to us like the direction is obvious, but we have been praying for God to guide the doctors in their decision making and we trust that everything is working out according to His plan.  In the process of waiting until next week for another echo and further steps on this path, will you pray that if Grace needs to have a valve replacement that it will be obvious to the doctor's (but without Grace having to go through any major trauma in the process); or, if she can make it on her valve for a little while before needing to have it replaced (non-emergently), please pray that it will be apparent and that God will help align our hearts with His will.  Thank you for your continued prayers and support!  We love y'all!
I'm baaaaaaaack :-)

It's me-  In all honesty, today has been rough for me…  when I got David's text about Grace's gradient across her mitral valve being higher than before (and it was already considered high last time when it was 11-13), I felt deflated because we have invested 2 weeks of recovery and hope that this valve might work.  Her personality has just started to shine through today (scrunched nose smiles, waving, clapping and drawing everyone in with her sweetness)…
And, she just got the staples in her chest out today, so the thought that they might have to open her right back up, makes me cry as I type this because it feels so barbaric.  However, the last thing that I want to do is bring her home (to Texas) with an unreliable valve and fear another crash cart experience, so that's why our preference has been to replace it.  The reality is, we are at a fork in the road and whichever direction God leads us at this point, there will be the temptation for fear, doubt, and heartache to lurk around every corner.  Therefore, I will hold on to God's promises for dear life because this fire is HOT… 11 For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11

It's hard to imagine celebrating Andrew's birthday tomorrow without David and Grace here, so I can only imagine what Thanksgiving will be like, but in God's strength we will choose joy and gratitude because we have SO VERY much to be thankful for!  For instance, God has used so many of you to remind me/us that we aren't alone in this fight.  You have also allowed me to get excited about the hope that our family will be reunited for a special Christmas in Boston!  I can't even imagine what it will look like with all of the logistics and uncertainty between now and then, but all that matters is that (Lord willing) we will be TOGETHER to celebrate the birth of our Lord and Savior, Jesus Christ!  The only reason for the season :-).  To each and every one of you that is praying for us and that has made it their mission to get Grace back to Boston, to make the holidays special, less lonely, and as stress free as possible, we are eternally grateful and don't take an ounce of your kindness for granted.                 

(((BIG HUGS)) with complementary tears and snot on your shoulder :-).

1 comment:

Kathy A. said...

I picked up my little daily devotional yesterday and it spoke directly to WAITING, something none of us are very good at.

"Lord, in Your infinite wisdom and power, You work behind the scenes to prepare all things for just the right time. Teach me to wait well and to trust You to know when the fullness of time has come."


"Teach us, O Lord, the disciplines of patience, for to wait is often harder than to work".

LOVED seeing Grace sitting up in her bed looking adorable!

Aunt Kathy (with hugs)