Jenny had a difficult morning yesterday in which she was flexing and twisting her whole body in painful ways for much of the morning. I am not sure what triggers these spasms, but it interferes with her ability to do anything on her own.
There is talk about removing her cathater and trach in the next couple weeks. Jenny is more than excited for those to go. We have been discussing more future plans, which seems to be going well, with some emotional times, but generally productive outcomes. We are looking into buying a van and doing some renovations, which will make life more enjoyable for Jenny. Jenny has become really comfortable with some of her nurses and she is working well with her therapists, despite reporting constant disomfort and severe pain in rehab exercises.
Jenny has tried to manipulate me into staying overnight any way that she can. I finally gave in again, but I now have to be gone during the day hours to catch up with errands I need to run and to spend time with the kids. I realize her concerns since some of the night nurses are not around her when they can see family interact with her and learn her communication, as well as her likes or dislikes. As much as some nurses try, I doubt they really know what Jenny needs. Others do really well with her. As for today, she has a sub nurse and tech who do not know her. That is no big deal since the family does most all of the care from dressing, feeding, moving, and cleaning during the day hours. Missy and I are pretty good at manual transfers, so that is going pretty good for us right now.