Wednesday, November 6, 2013

SERIOUSLY precious cargo delivered...

The crazy, red bull drinking butterflies that took up residence in my stomach today, finally took a rest when I got David's text at about 1:10 pm that they had landed safely and that Gracie did good on the flight (no complications).

Grace being loaded into the ambulance... next stop, Boston Children's Hospital!!!

It seems like Grace (just like her Mommy and Daddy) had a huge sigh of relief when she arrived to her home away from home...  BOSTON CHILDREN"S HOSPITAL!!!
Doesn't she look a lot less "rough" than she did this morning?  To God be the glory!

We are in no way out of the woods (Grace is still critically ill), but we are beyond grateful to have her in the place that can care for her (and us :-) like nobody else!  The best way to communicate how much BCH and our Dr's there (specifically Dr. Marx, Grace's Cardiologist) mean to us is to quote the text that David sent me shortly after getting Grace settled in there..  

"they are doing echo right now and Dr. Marx is in here too.  I felt like crying when I saw him (if I was a chick I would've) just because it felt so reassuring to see him."

We have spent the last week at TCH feeling beat up for having to constantly defend why we made the decision to take Grace to Boston.  Not to mention the doom and gloom attitude about her condition that haunted us day after day.  Therefore, getting Grace to Boston has changed everything... When David told Dr. Marx about what we were told by the Chief of Surgery at TCH (the checkmate comment), he looked flabbergasted and apologized that we had to endure that.  He is hopeful that a mitral valve replacement (which is still very risky) should take care of much of the problems that Grace is experiencing with her heart and lungs (that was his preliminary opinion based on a 3D echo, they still need to gain more information via a heart catheter to make the final call).  It appears that her problem isn't really mitral stenosis, but instead mitral regurgitation.  A huge gigantic praise is that the function of the left side of her heart is good and that is really super important (the left side of your heart does most of the work)!!!  They have scheduled a heart catheter (which has to take place before they can do surgery) for Friday because they want to work on getting her more stable before doing any invasive procedures.  If the heart catheter isn't until Friday, I'm not sure when they will do surgery because Dr. Marx also said that they needed to do something (surgery) sooner than later.  

-they can get the fluid in Grace's lungs under control 
-that there hasn't been any permanent damage sustained to her heart or lungs 
-wisdom for Grace's team of Dr's as to what the next step(s) should be and when
-wisdom and strength as I try to juggle being here for Abby and Andrew and there for Grace and David

These two hunnies are the best distraction and source of joy during such an incredibly tough time...

I have so many stories and thoughts that I want to share with y'all, but they will have to wait because this momma is EXHAUSTED!!!  I wish that I could hug each and every one of your necks tonight, and thank you for ALL of your support (((BIG GIANT HUGS))).  The fight for Gracie Doo's life is far from over, but I have full confidence that...
so, please keep the prayers coming, sweet Village!


The Keierleber Family said...

So glad it all went smoothly! And SO thankful David, (and apparently Grace) ;) seem to be having a bit of stress relief being at Boston. I knew I loved that town for a reason. ;)

Praying for and thinking of y'all nonstop!

As often as I have wished I lived in Boston, I have never wished it more than now. I would love to be able to be there to help David in any way!


Joel said...

Praying for this precious girl and your family.

Wanna-Bee said...

I just heard your story from a friend! Can we become Facebook friends?! Is that a weird request. My son has Ds and we live in Delaware. I'm working on getting you some contacts in Boston of other Ds Families to reach out to your husband. Could you email me?

rosedel said...

I am hopped over from "No Greater Joy Mom". Just want you to know that I am praying for Grace and your family.

Bernardine Farmer said...

I am thankful Gracie has made it to Boston safely. All of you are in my thoughts and prayers.
Holding you in my thoughts
Bernardine Farmer