Search This Blog

Thursday, July 9, 2009

Step 2.

I sit here with such a combination of emotions, all passing by me at extraordinary speeds.

I just got the call from Stanford that they reviewed Gabriella's file and do not reccommend any kind of surgical repair. The risks associated with attempting to repair the Myocardial Bridge are far greater than leaving her condition alone to worsen. (In fancy terms, I feel that means it would kill her now rather than later) And that even if they felt they could repair the bridging, the Restrictive Cardiomyopathy would still result in transplantion, as that doesn't improve.

So transplant it is.

I feel so angry, because my daughter has lost an entire month waiting on lost discs, doctor's vacations and phone calls.

I am aggrivated because I knew this was going to be the outcome, but had to wait on 'the system' to works its course.

I feel grateful for having these past 5 weeks home with my babies with minimal talk of transplant and apointments.

I feel petrified as the process begins now. Neuro testing, blood draws, tissue tests, transplant consults, waiting lists.

I feel brokenhearted and helpless because of what I know Gabriella is about to start going through- yet she has no idea.

I feel blessed for her being (for the most part) so healthy still and having such amazing people in our life to walk this journey with us.

I have already called Loma Linda and spoke to Armando (parents out there who have dealt with transplants at LL alllll know who Armando is. He is such a sweet man.) And he is going to go over with Sharon (our nurse/liason here) all the testing that can begin here in Phoenix. He is going to call me back with a good time to go to Loma Linda and visit with the doctors and have a transplant interview/consult... whatever it is.

I am kinda raw, and after typing this short entry to let you all know, the sadness and emotion has settled in hard. Please be in prayer for strength through this process, as these steps that seem so difficult are only the beginning.


Anonymous said...

hey, This is Angela. The other girl in Surprise that needs a heart transplant. Let me tell you, this has not been easy. I want to share with you my verse through all of this it's Psalm 73:26 " My flesh and my heart may fail, but God is the strength of my heart and my portion forver."
He has little Gabriella in His hand and he is not going to let go. When we started this, it was easy to give it to God cuz it was so big. It is very hard to wait, but over all we are in God's hands. He knew that Gabriella had this before she was born and He will bring you guys through this and bring you closer to Him. Also remember, we are setting a example of Christ. I pray that He gives you strength every single day. :D

Tonya said...

Ordered my Gabriella Band. I know it's not much, but I will be passing out some extras to ask others to pray. God bless.

Unknown said...

Hang in there. We are with you.
Brooke, Dano and Macy

Megan@SortaCrunchy said...

My heart is heavy with sadness as I read this, Kristi. I am encouraged by the verse offered by the commenter above . . . I can't think of anything profound to add to that.

My heart, my prayers, are with you.

Anonymous said...

Paul, Kristi, Lisa;
I sit here with tears falling, unsure of what to say or feel. I am so sorry for what you are all going thru and wish I could take it all away. Please know that we are standing with you in prayer and are here to do anything we can to help!I love you all so very much!

Laura said...

Continued love, continued prayers, continued thoughts...I wish with everything in me that you guys weren't having to go through this. May you feel God's presence so strongly with you in the coming days, weeks, and months ahead.

Corey~living and loving said...

my thoughts and prayers continue to be with you. ♥

Anonymous said...

God will be your strength and you will be Gabriella's strength. She will look for your eyes, your embrace, your unconditional love. She will have angels surrounding her but it will be you she seeks out. You are an amazing mother, never forget that!! (and a striking writer!)
love, teresa