Being here you meet other parents. We're all in the same boat. We don't ask each other, "How are you today?" Instead, we ask, "Good day?" and the unspoken "or bad day?" Today, I'm having a very emotionally hard day. Ari would've passed the extubation readiness test (ERT) today and would've been extubated. She was breathing on her own with vent settings on minimal support. They however did not do the test and will not be extubating her because she will be having another surgery. We don't yet know when this surgery will be but it will be. Trying not to think about what ifs and staying positive.
Matt here now writing. In some ways it's "easier" to be out West and so occupied with Ella than to sit bed side with our little warrior princess. I know from being there it's so hard not able to make things "right". Ariana looks at you with these bright big eyes communicating to you that she just wants to be out of this hospital mess and be home with her family and start the being a baby part of her life. She hasn't been out of the bed for almost half a year and hasn't been able to breathe or cry while they keep the tube in her. When mistakes are made by so called experts it just makes things tougher. Despite all this we continue to look forward and keep our heads up and know in our hearts that this will all pass and Ariana as well as her family will come out of this with a new understanding of life and love.
3 comments:
Love you all so very much.
Hello to all of you and sending hugs and kisses for Valentine's Day . I know it must be so difficult to cope with all that is going on, on both the East coast and the West coast. But you can never give up hope. So glad that Ari seemed relaxed on Friday. Nina, reading to her is a good way for you to relax also. Peace be with all of you always.
The most difficult thing I've ever done.
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