Kylie had another episode this
morning…
Even with the ventilator turned all the way up to 100, her Sats stayed at 84.
Now imagine her not on the vent at 100% and you have what happened three days ago.
I never want to go through that again.
Once we get closer to discharge, then they are sending Kylie home with a ventilator.
I’m not trained on the ventilator so they will be doing training over the next week.
They will also do more emergency training which I am so thankful for. I want to be as knowledgeable as I can be to help Kylie.
We still have no idea what is causing these “episodes”.
It more than likely is the rejection.
I did request an echo just to take a look at her heart, because her heart rate over the past two months has been very abnormal.
We will do more tests tomorrow to see how her heart looks.
We are still waiting on the results for the antibodies attacking her lungs.
I would love to see some cute, organized set ups of at home ventilators.
Any cute accessories, tips and advice would be so appreciated.
Please pray we get some answers soon
As always, we love you all so much.
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** look at this crazy bed hair and silly sleeping position! She makes me laugh. I love her so much
