Monday morning Daniel had a physical therapy appointment and we reviewed discharge instructions then we were on our way home. The night before had been difficult with little sleep for me, as predicted muscle spasms had kicked in. Daniel also didn’t have the epidural in any longer and after the two PT appointments on Sunday he was feeling the pain a bit more. He had asked to get up and drive his wheelchair around a bit and go back to the garden before his PT appointment Monday morning. In the midst of all that I forgot to get his pain medicine before PT, so it was a rough session. I felt terrible and it was hard to see him hurting and struggling so. Especially after all the good work I had seen him do the day before, and some awesome walking I saw his little friend Noah doing in the session just before Daniel’s, I felt so impacted by what is ahead of us and felt really discouraged. I was reminded that the three steps forward, two steps back experience is an expected part of the recovery and Daniel was really doing great, but I found myself anxious about going home and not having the support of the hospital staff. Unfortunately my tiredness was getting the best of me and this perspective hung with me the rest of the day.
Getting home was good. Daniel seemed really glad to be home and we were hopeful for a good night of sleep for all of us. Unfortunately we may have had the worst night yet. Daniel was struggling in his bed, having a hard time moving around and experiencing muscle spasms (these are expected to only last a few days). The air conditioning also went out and as the night went on it got hotter and hotter upstairs. Daniel didn’t understand and was furious that he was so hot, screaming and throwing an absolute fit for a long time. We finally got him settled and I got to sleep again around 5 a.m. David so sweetly took care of Daniel and let me sleep until 8:30, but we are just so exhausted. It was a rough day in regard to Daniel’s behavior, which I am sure is exacerbated by how he feels and that he hasn’t been getting good rest either. He had a PT appointment this afternoon and worked hard. His therapist said he was walking better than she expected him to be doing at this point so that was encouraging. The stress is definitely hitting us and I am now sick with a cough and slight fever. We are definitely feeling the pressure. We are praying for a better night tonight. My wonderful husband fixed the AC with a $10 part from Home Depot, so three cheers for David! We are very thankful for AC tonight!