Well, it's been quite a weekend. Tom was doing pretty well after the abrupt discharge from the hospital. He wasn't feeling well all day Saturday - we're not really sure why. He started getting disoriented Saturday night. I gave him extra medicine and I was up with him every 30 to 45 minutes through the night - I am not exaggerating! He was better Sunday but disoriented again last night. We did get a couple of hours of continuous sleep but he was not better this morning, in fact he was getting worse. A caregiver was supposed to be here at 7 am, I normally would have left for work at 6:30 if the person I know is coming has been here before. But because Tom was not doing so well, I decided to wait . . . And wait. She never came. I called at 7:45 to find out what was going on. They told me our assigned caregiver was ill and would not be here - apparently someone was supposed to call but they didn't. Now I know how a mom feels when the babysitter cancels! Anyway, they called back and told me someone (new) would be here about 10 am. Fortunately I have a very, very understanding boss and team! I was worried we would scare away the new caregiver when I gave her the situation but she said she would stay. I was so relieved to head to work. Tom and I get really stressed out with each other when his ammonia level is high. I also had to send the painter away today. We are both desperate to get the painting finished but there was no way for him to work around Tom since he needed to work in the kitchen and family room. It will have to wait.
I called about two hours later and Tom had not improved. I received a call about an hour after that and found out that the home health nurse had stopped by for her evaluation - Tom goes through this every time he is discharged. She did not draw blood but thought he was responding pretty well. She also told me the physical therapist had called Tom and he was planning to come by as well. Tom asked to talk to me and he did sound a bit better. It made me feel a little better that the nurse had seen him. I called the physical therapist to let him know that Tom was not quite himself today. He suggested postponing his visit but I thought Tom might be looking forward to the visit (company) so I told him to go ahead and come - I knew I would be home by then as well.
Tom did a really good job with physical therapy, I watched what they did and asked how often the exercises should be done. I told Tom we would do them together tomorrow. He's eaten some soup for dinner and is sleeping now. I am praying hard he will improve. It's been a really tough day physically, emotionally and spiritually. I'm thankful to be able to vent to my co-workers and family. Rest would be good but it's more important for his ammonia level to go down and rest and ammonia are like mixing oil and water.
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