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Wednesday, June 15, 2011

Watch & wait

We met today with key people of our cardiology team & CVICU team to talk about what's to come. Gabriellas function has yet to improve and she started presenting with PVC's today- irregular heartbeat- another sign of her aching heart. She's on so many IV drips to control her heart function as best as possible. Turns out her biopsy results were not clear cut conclusive, but she is certainly in some level of cellular rejection after further testing. The portions of her heart affected by this rejection are not typical or on track with rejection, but in a good way because some muscles have been spared this far. Her kidneys are producing beautiful urine so we do not have to stress over that right now.
The initial option today was to transport Gabriella back to Loma Linda. Reasoning behind that was more big picture. IF she goes into a more critical status where she needs ECMO, Loma Linda has the resources to care for her from a transplant standpoint. They can relist her while they cannot yet do that here. After we all conferenced with Loma Linda, they encouraged us to keep on with the full Thymo treatment and watch what her blood says. They said they'd be happy to take Gabriella but they are confident in the treatment. So we are staying here for the time being while Loma Linda runs some in depth labs on her. I'm confident in the plan, but not comfortable. I won't be until they see improvement in her. But I won't be comfortable anywhere until she improves. And that's what I continue to ask for in prayer, is improved function and restored structure.

Gabriellas spirits are completely turned around today. With the exception of being angry that she can't walk around, she's overall in good spirits! We have had loving friends, comforting family and faithful prayer warriors come today and it is just what we needed to keep us smiling.

Like Paul said to me earlier, we need more than medicine... we need God.

I'm going to have an 'iced tea party' with my smiling girl, enjoy right now and pray for many many many more years of tea parties. <3

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