So Saturday I got to see mom walk about 125 feet with the aid of a walker and her Physical Therapist. It was awesome! Her PT said that she wasn't responding to commands as well, but her strength was better. It's not unusual, some times are just better than others.
Yesterday was pretty good in the morning and early afternoon. I woke up at 8am to see her sitting upright at the side of her bed. Up until then, she had woken me when she wanted to get up by saying "yeah yeah yeah". She was just sitting there. I asked her "Whoa. Where are you going!?!" as I jumped up to check on her. She just looked at me and quietly said "Yeah, yeah." I asked her if she had to go to the bathroom and she confirmed it. We called for assistance and just afterwards, I noticed that she pulled her PEG tube out. Not the whole thing - there's a breakaway piece and that came disconnected though, and her liquid diet was dripping onto the bed. Everything was okay though. She was reconnected and was happy to get back to bed.
A couple of hours later her Tech came in. She wasn't very alert and didn't want to sit up, but we moved her to a chair while her linens were being changed and told her she could put her head back and sleep there if she wanted to. It's good for her to sit up, hopefully helping break up the conjestion in her lungs. BTW, she sounded a lot better yesterday too. Still bad, but better than the day before.
Mom ended up sitting in her chair until she was picked up for transport to the LTACH. Towards 1pm she was really putting on a show for us and making us laugh. I had walked by her with my soda and she started licking her lips and reaching for my cup. I felt so bad when I said "Oh mom, you can't have this. You can't drink anything. Let me get a sponge-pop to clean out your mouth."
When I came back and put the moistened sponge in her mouth, she clamped down and started sucking away. There wasn't enough water to hurt her, so I let her keep it. A few minutes later she was playing with her ice pack and looking at me. I said "You want some ice, don't you?" and she nodded yes. I said "Mom, you can't have any. You can't have any liquids right now. It's too dangerous until you can swallow correctly." and she looked sad. She lifted the bag to her mouth as if she could drink the ice cubes right out of it, keeping her eyes on me. Then my dad said "Whoa. What are you doing? You can't have that. You can't drink that, it's bad for you." It looked like she was trying to use the sponge-pop as a straw and he told her "that's not a straw!".
She put her head down, hiding behind the ice-pack and began to cry. We all siezed up and got quiet and my dad leaned over to say he was sorry and hug her. As he did, she peeked over the top of the ice-pack and started laughing - really loudly. It was so funny! We all laughed out loud for a while and she laughed and smiled a lot too. She was clearly pleased to pull a fast one on us.
The transport picked her up at 2pm and dad went over with her. I went home and met up with him at her new place at about 5:30pm. He wasn't very happy. The change hasn't gone smoothly so far and the bedside manner is leaving much to be desired. I called him this morning, and he seems much calmer - but getting tired of hearing that they don't have her chart or doctor's orders to continue her care in a seamless manner. It's quite a hopeless feeling and I hope to have a better report the next time I write. If I don't, you know I will be raising some hell.
Please pray that it's all in our head and that she is in the best possible place she can be. The most important thing right now is her rehabilitation, but her comfort is important too.
xox,
Tommy
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