I started mom’s day with her this morning before work. She was asleep when I arrived but, as I did her physical therapy, she woke. I talked to her and she watched me working on her range of motion exercises, but she didn’t speak back or smile or participate in the exercising. I combed her hair, washed her face and clipped and filed her nails. Then I left for work.
Anthony came to see mom next. He found her awake in her chair looking at her, “All About Me” book that Claudia made and she was trying to write on the pages but couldn’t because the pages are in laminated sleeves. Anthony gave mom some paper and she actually wrote 2 words!!!!! “SEE” and “ANY” then she wrote some letters!! The physical therapist came in and had mom lift her legs (right leg 3 times, left leg not at all). Then he brought a bicycle type of machine and did hand over hand (or hand over foot) prompting on it so that mom could move her legs on it. He told us again that he wants to bring her to the gym as soon as she is off the vent.
The respiratory therapist came to see mom with a respiratory doctor and they both said that mom is going off the vent on Monday!!!!!!!!!!!!! The trach will be capped off during the day and she will try to breathe on her own independently. She will be on the CPAP mode of the vent at night only.
Dad and I and Claudia visited mom in the afternoon. Mom continued writing on the white paper. At one point, I wrote, “CLAUDIA” and said, “Here, watch, write Claudia” and mom did it!!! She wrote “CLAUAUDUDIDA”!!!! Mom began to sew the sewing card after that. We talked to her about our day and she sewed and watched us. At one point, mom began to fan herself with a piece of paper. Mom traced numbers on the IPAD next. We bought her a stylus for the IPAD and she likes it. For the most part, mom was able to find/identify numbers as the IPAD asked her to identify them!! Ava came to visit with mom late in the afternoon. She was glad to see her. After we women left, dad remained with mom until early evening.
When I came back to tuck mom in, I noticed that she was back on the vent at a #10 setting. She appeared calm and was sleeping. I found the respiratory therapist and he became very defensive with me when I questioned why mom was put back on the vent. I asked if anything changed or went wrong. He raised his voice and didn’t really answer and said I would never understand the concept of the vent and how it works and that all I needed to know is that she is fine. I politely asked what had changed to make her go on the vent again. He said that, for him personally, he is more comfortable knowing that she is on the vent and safe and he said that none of her numbers had changed. He said that, after reviewing her numbers, he was making the decision to put her back on the vent for the night---for him, he was more comfortable that way. The numbers he was quoting were the same ones for the past 2 ½ weeks so nothing changed. He just appeared to want to react with extreme caution. There was no one around to appeal to so I let it be. I only pray that this doesn’t set her back in any way. He spoke about her being fragile still and tired from breathing and exercising… I put mom in God’s Hands. As John says, “It is what it is.” It is just hard to live in the moment and not plan or worry about the past and future. But I guess that if I put my life and hers into the Hands of God, I needn’t worry.
“Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.” Matthew 6:34
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