Wednesday March 16, 2011

Another difficult day. John slept better last night but was really feeling rough this morning. For the first time, his pj's were soaked which meant he was sweating at night as well.
Got him moved to the sofa where he slept until the next worker came at 11am.
He was good enough by then to get up and get the rest of his morning prep done. By early afteroon he was bad again. I increased the meds but it did not seem to make much difference. I skipped several feedings, hoping that would help, but that did not do anything either. But now I have to stay up and give him the feedings I skipped earlier - so late bedtime for me tonight.
The OT came in today to assess John's rigidity etc. I think that we are going to have to get a different kind of lift for John - one he sits on and swings him into his chair and bed, rather than the one he is using right now where he has to stand. But in order to use the other kind I have to get a platform built for his chair.
Margie called today and Uncle Jack's funeral will be next Monday. I will try and get respite for then so that I can attend the funeral.
Please do pray for her as she tries to deal with all the many details, as well as the grief.

one thumbs down for today.