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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.
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