Walking out of the elevators from the parking lot, I had to pass a medical screening to be permitted into the rest of the hospital. They are taking this very seriously.
Bella continues her new norm – playing with her vent settings, desating here and there, and having episodes of brady and trachy – but recovering from them.
The plan for the weekend is to try and let her ride it out and not do much to her. On Monday the Pulmonologists want to talk to me about Flovan. I’ve been hoping we could avoid it, but I guess not. We’ll see on Monday.
Our one day of nothing major (or are we just getting used to this new norm) has sparked a glimmer of hope. This morning I dreamed that Bella was propped up on pillows, we took out all of the tubes, she opened her eyes, looked at me, and smiled. Heaven.
Yesterday I was able to talk to Joy’s therapist about Bella. We talked about what kind of services she would receive. We talked about her room. It felt so good to be planning for the future – a good future. On Wednesday, the doctor and I talked about dying. I just needed to know. He acknowledged that she was on that path if she didn’t improve. BUT he told me, the team has not discussed it, which means we aren’t to that point yet. Thursday she had a more stable day. One glimmer, I’ll take it!
7 comments:
I want to take you in my arms.
Gabriela
Keep holding to the silver lining sis and hopefully it will get bigger and turn into a beautiful ray of sunshine!
This is Joyce. I so remember the night that John and I were lying in bed, neither of us really able to go back to sleep as we had just been called in the middle of the night to let us know that they had found another infection source and the O2 went back to 100% along with a whole new round of meds. I turned to John and I said I needed to confess that I was having moments that I just wanted her little body to shut down and not have to suffer anymore. John confessed that he had been thinking the same thing but did not want to tell me. We cried and hugged for an hour or more and then got dressed, took TJ to daycare and then drove to the cemetary to look at the new mausoleum that had just been built. For some reason I did not want my baby girl underground.
We then went to the hospital to tell Sarah it was OK to let go. That day was a turning point for her. She threw a fit as if she knew exactly what we were talking about, the machines started buzzing wildly, nurses flying in, and the doctors were scratching their heads. By the end of the day, she was looking better than she had for two months. That day was also a turning point for John and me. We felt like we had stared death in the face yet Sarah and her creator were telling us who was in control.
We are thinking of you during these trying days and hoping Bella starts climbing up the hill this weekend. Better days are surely ahead.
Hope is some extraordinary spiritual grace that God gives us to control our fears, not to oust them. ~Vincent McNabb
Hope is that thing with feathers that perches in the soul and sings the tune without the words and never stops... at all. ~Emily Dickinson
Hope is faith holding out its hand in the dark. ~George Iles
Thinking of you and knowing it is more of than just a glimmer.Those days of dreaming will be replaced by your reality of having Bella home with you all.continue to believe that.Continue forward with Bella leading the way.
Glad life has been uneventful for sweet Bella. No news is good news. Hugs from me and jax
I hope, each day that 'glimmer' gets brighter. That's all you need, is just a glimmer...great things will happen from there. Prayers always for you and Bella!
Yeah for the glimmer! Get strong Bella girl!
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