Caitlin started to feel abnormally horrible on Saturday and began to rapidly deteriorate. Her team couldn’t get her plummeting sodium or elevated CO2 under control. She knew something was seriously wrong with her body, at the same time that she was increasingly out of it.
Last night, around 8pm, they moved her to the MICU to hopefully stabilize her. At midnight, one of the transplant surgeons told us they needed to quickly put her on ECMO, which is a form of life support that circulates the blood so as to oxygenate it and remove the high CO2 levels that are putting pressure on her heart.
The procedure calls for large cannulas that are inserted into the groin and neck. Her heart went into SVT 3 times and she had to be shocked 5 times. The surgeon told us she wouldn’t remember it, but unfortunately she remembers every bit of it.
At 3am we were able to see her in the CTICU and we are still here. She’s fully conscious, is mostly immobile, but able to talk, with effort, through her oxygen mask. She is still fiercely advocating for herself and telling us we need to watch everything, question everything, for her.
She just asked me to please do a blog post, said, “Need prayers.”
She’s at the top of the list here now. Her score is now in the 90s, and that also makes her a national priority.
Fortunately, we know other people who’ve been through this and lived to tell the tale, so we remain positive. Early on during this admission, Caitlin said she needed “ferocious positivity” from everyone. There’s actually a young woman from MA here, who was on ECMO and was transplanted in early November and who is doing well. And here’s an incredible one: http://www.cfcornerman.com. Thank God for these ferociously positive stories.
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