My return to full time stay-at-home status with the kids in summer break mode in Mpls has made posting updates more of a challenge than I would have hoped. So here is the catch-up post.
Sarah has had an ebb and flow to the last couple of days, but for the most part stayed fairly stable. She has done well with challenging herself: showers, walking, riding the bike, hours off the ventilator. She has also had some trying times, and can't seem to get past some pretty severe exhaustion. But the truth is that she had 20% lung function when she was 'healthy' and surely that has decreased with the latest episode making recovery more of a task than if she had better lungs. She also had a bleed in her lungs yesterday, which because of the trach sprays out all over, evidently making the equivalent of a CSI crime scene. Obviously, this can be very troubling to her level of comfort, as she is just trying to get out of crisis mode and back to 'normal'.
They have talked of getting her back to her life, and that has been good and bad. The escapism of TV, movies, music, and art are all very useful distractions for helping her pass the time and forget she is in an ICU unit. The Recreational Therapist stopped by and helped her get started with some painting yesterday, thus validating her 'I paint' comment from the other day. However, the discussion of possibly getting her out and back home has come up again and is not a helpful conversation at this point.
I think she has seen every kind of therapist they have at the hospital: respiratory, occupational, physical, recreational, etc. I might just put on scrubs, walk around with a bunch of plants and call myself a landscape therapist just to see if anyone bats an eye.
I will try and be better about updates, and perhaps when I get back down to Rochester tomorrow I can get her set up to post something herself. Wouldn't that be a treat!