I began the day with mom today. She was awake and had just finished breakfast even though it was only after 8 a.m. Mom and I talked a lot this morning. We spent time just hanging out and hugging and talking and praying first. I anointed her with frankincense (good for the memory when put on the temples). And we prayed and talked about the season and Holy Days and Passover. We talked about Jesus dying on the cross as a sacrifice for our sins so that death will pass over us all. And we talked about the search for the perfect lamb without blemish that every family had to find and slaughter in order to put the blood of that lamb on the doorpost and lentils in order to save the household inside during the time of Moses. I guess we had a Bible Study and time of prayer this morning. It was lovely. Mom listened intently.
We read some Easter cards that people sent. Or, I should say that I asked mom to read them and she mouthed every word…one from Virginia and Bob, another from Uncle Mike and Aunt Pat, and the last one from Aunt Carol. After she read them all to me, I asked if she wanted to call Aunt Carol to talk and she mouthed, “Yes” but as I was dialing her, dad called. Mom grabbed for the phone when she heard his voice and she listened intently as he spoke…she even conversed with him. After dad said, “Hi,” mom said, “Hi.” When he asked how she was, she told him, “I’m fine.” She answered questions about breakfast too. When dad hung up, we called Aunt Carol. Mom did the same with her, answering questions about how she felt and what she ate…etc. Mom and I did her full physical therapy/range of motion exercises next. I put on some peppy Janet Jackson music and mom counted and helped move her body as we progressed. She was able to count with me to 20 with no problem. It’s too bad she still has the vent and the trach because it prevents us from hearing what she says. As she is, we have to do a lot of lip reading. Near the end of the exercising, mom began to fall asleep on and off…more off than on. When she woke at one point, I put the bed desk on her lap and asked if she wanted to read, she mouthed, “Yes” so I asked if she wanted to read the baseball magazine and she said, “Yes.” I set her up and in between snoozes she read the magazine.
One of the respiratory people spent a lot of time with mom and I this morning. The therapist said that mom had multiple episodes of apnea yesterday and last night and the night before. Her numbers went up to 43 (42 is the highest they like to see in the high end of normal). For this reason, they took her off CPAP mode and put her back on the SMIV mode of the vent. What this means is that the vent breathes more and has a quicker response when mom stops breathing. The CPAP mode of the vent requires mom to breathe more on her own and without a quicker response time for breathing for her during periods of apnea.
Anthony came to see mom next and we both worked on using the bicycle machine for the hands and arms with mom. When we held one hand on it, she was able to hold onto the machine and follow the rotations we moved her in. The respiratory therapist checked mom’s CO2 levels again after an hour of being on the CPAP mode and also after we were working on the exercise hand bike. The therapist said that mom’s levels hadn’t changed which is good because if the CO2 levels went up after exercise, it would mean that mom was not able to exert herself. Since the CO2 levels stayed the same, it meant that mom was able to exert herself without stress on her body. Anthony used the hand bike machine in many creative ways to help mom. One way was to have mom hold the crossbar of the machine and hold on while he pulled the bar further and further away from her…mom did it. Then he used it to have mom hold the bar and reach upward. The aide came to change mom then and wash her up and put her in the chair. The aide said that mom and she laughed because the aide said that while she was putting cream on mom she told mom it was like greasing a turkey and mom laughed really hard. Lunch came (salmon, pears, rice pilaf, and string beans). Mom doesn’t like fishy tasting fish so this wasn’t her favorite meal. She kept falling asleep during lunch…it took forever for her to finish lunch. Predominantly, we fed mom or did hand over hand feeding…once in a while when she woke up, she fed herself. But she would fall asleep in the middle of eating a lot too. When mom wakes up after falling asleep in the middle of things, she picks up right exactly where she last left off in the activity she had been engaging. Mom ate about 1/3 of her lunch. Mom’s dear friends, Florence and Maureen, came to visit this afternoon. She smiled at Florence when she saw her. Florence brought mom an Easter gift and mom grabbed the bag as I untied the bow and took the contents out---a really soft pink rabbit with gingham bows! It was adorable and mom seemed to like it. She had just taken her pink, soft bear earlier today and rubbed it against her cheek. She will enjoy this stuffed animal in the same way. It is probably frustrating for mom to not be able to join the conversation...Carmine, John and Con's cousin who is a speech therapist who works with mom, says we should all just speak normally to mom...maybe a little slower but about the same things we always would because he feels mom knows what is going on around her. Mom slept through much of the visit but listened to us talk whenever she was awake. Dad joined us mid-afternoon. Mom kissed him hello. Mom had periods of shaking in her hands and arms this afternoon and when this happened, her total rate shot from in the 30s to the 50s but went back down on its own. Two other friends from church came to see her briefly too. Mom smiled broadly when she saw them. The ladies stayed and visited with mom and dad for a while this afternoon (they both typically are part of the friends and family crew who enjoy Easter breakfast at mom and dad's). When the aides came to change mom and put her back in bed, the ladies left.
Con and Samantha came to see mom tonight. Dad went to get some dinner and then eventually went home, while the girls stayed with mom. Sammy said that mom was awake but not responsive and didn't want to play games or do anything at all so they did her physical therapy/range of motion exercise and then held her hands and talked and watched TV. They prayed with her eventually and tucked her in for the night.
"He who dwells in the secret place of the Most High, will rest in the shadow of the Almighty" Psalm 91:1
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