Lenny began the day with mom this morning early. He woke early, showered and went to mom with his schoolbooks in hand. Mom ate French toast and oatmeal with juice and coffee for breakfast. She ate the whole thing. After breakfast, mom fell asleep so Lenny did her full physical therapy/range of motion exercises as she slept. He did homework while mom slept then mom woke up when they came to take her blood (routine blood work). They talked and watched TV. Lunch (chili, rice, bread and veggies) came and the occupational therapist came to work with mom. Lenny said that mom took 8 forkfuls of food independently near the end of the meal. He said that the occupational therapist said that she was very happy with mom’s work today. Lenny and mom talked about college and Lenny did his reading with mom.
When I came to see mom this afternoon, she was awake and alert and smiled when I said hello! She was in her chair watching the cooking channel and dressed in her sweat pants and long sleeve T-shirt. We went over the calendar. The calendar is laminated and we review what yesterday was (day and date) and then I ask her what the name of the month is, the name of the day is and the number of the day. Mom read everything but could not spontaneously tell me any of the information. Next, I wrote the calendar information on the white board. I wrote, “The month is___” and mom didn’t know so I told her as I wrote it on the board and she read the information. I did the same with the day and date (April 4, 2011). Mom read all the information. She played with the squeeze toys a while on the table in front of her. She also tried the sewing cards with me again. I showed her what to do and then I did hand over hand prompting. At first, mom didn’t know what to do, but then she managed to take the lace at the end and put it into the hole on the card 3 xs alone!!!! Yippee!! She didn’t know how to pull it through but she did put the end of the lace into the hole. We did crosswords next. Mom got the following clues:
“Gettysburg victor. Who won the battle at Gettysburg? G….” Mom said, “GRANT”
“Macabre author. Edgar Allen….” Mom said, “Poe”
As we worked on the crossword puzzle, I left the squeeze balls on the table for mom to fiddle with as we read and guessed the clues. Mom began to become sleepy after 2 ½ hours.
I spoke to the dietician today. Mom is on a “No salt added” diet which means low sodium. The dietician said we can cook for mom and bring in food for her but if we do that, we need to tell the nurses what she ate and how much because it is all recorded. Mom lost about 40 lbs to date. This is good. She has more weight to lose. Someone recorded the wrong weight twice!! This showed a dramatic reduction in weight but then we saw that her weight was actually gradually decreasing. The dietician said that all of mom’s levels are good---protein, sugar, glucose… I asked about a diet of less carbs and more protein and she said it isn’t necessary and wouldn’t do it. I also spoke to the speech therapist who said that it is now OK for us (family members) to feed mom. Small bites and size of food. Mechanical soft food only. No jello or ice cream because it melts and then it becomes too soft. Nectar consistency for all liquids like soup, coffee, water, juice. We can add the powder thickener to any liquid we bring in but not the whole packet of thickener at once or the liquid will become too thick and lumpy. I also spoke to the respiratory therapist (one who we like a lot) and the therapist said mom is doing great and that she is on the lowest vent setting and there is no where to go from here but off the vent. The therapist said mom should be on a trach collar. The therapist said that the head of respiratory tried mom on CPAP vent mode again for a few minutes this morning but felt she couldn’t sustain the CPAP mode yet. The therapist I spoke to said that mom should just be left on the trach collar now. I told the therapist we need to light a fire under the head respiratory person and that I will work with the weekend crew to wean her.
Mom had stuffed shells, broccoli, chocolate pudding, vanilla milk, thickened water and decaf coffee for dinner tonight. She scooped and pierced maybe 3-4 times alone…the rest I did hand over hand. I also would help her scoop/pierce and then leave the fork on the plate and mom would bring it to her mouth alone. As I was feeding mom a few forkfuls, she would strain and push my hand with the fork away from her---she had some strength!!! At one point, as I guided a forkful of food to her mouth, she fought me and gave me the dirtiest, disgusted look!! She is too much! Dad and I told her stories from the old days when Claudia was little and used to call the whole family into the living room because she was “putting on a show for everyone” with all her dolls, the dog, her favorite doll that she used to carry around by the hair so it looked like it was bald with only a clump of hair sticking up in the middle (the doll’s name was “Luli” )…!!!! Mom laughed and smiled. We also told mom she looked like Terry when she was little eating vegetables and gagging!! She laughed. We watched the Odd Couple (Anthony and Con brought some VCR tapes for mom to watch) as mom ate dinner. I left as the CNAs came to put mom to bed (it was about 6:30 by then). Dad stayed for a while after mom was in bed but he said she fell asleep right away.
"and by his wounds we are healed." Isaiah 53:5
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