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

7 comments:

amiee said...

Constant Prayers from Boston!! Hugs Mama!

Meg said...

She has such an amazing spirit - look at that smile! My heart and prayers are with all of you everyday, Kristi. Here's to improved function and restored structure ASAP.

George Schroeder said...

Still praying. He loves Gabriella. He loves you guys.

christi said...

Abba Father, We lift up little Gabriella to you. She is so precious to so many people. Its difficult to accept when things are not like we want them. Please ease everyones spirit and show us what you want. Even if it seems unbearable, let us feel your calming hand. We pray these things in Christ Jesus name.
amen

myfatherluvsme3@aol.com

christi said...

Abba Father, We lift up little Gabriella to you. She is so precious to so many people. Its difficult to accept when things are not like we want them. Please ease everyones spirit and show us what you want. Even if it seems unbearable, let us feel your calming hand. We pray these things in Christ Jesus name.
amen

myfatherluvsme3@aol.com

lisa mcmartin said...

Oh Kristi... we are praying for so many things on so many levels for your sweet girl and your amazing family. Keep that faith up sister. It will carry you. He will carry you. So many nights as I went up the elevator after my shower break, to start another 23 hour shift I just asked God to carry me. He did. I love you friend. Please give Gabriella, yourself, and the boys a huge hug from Tilly, Nick and me. Thank you for the updates. I am glued to them as we anticipate what is to unfold for your princess. xoxoxoxooxoxoxoxoxooxoxoxooxooox

Heather said...

You know Georgia has you covered in prayers. I'm believing for G's heart to do it's thing. If you need anything (if even just an ear), let me know...
xoxox
Heather

Search This Blog