Chapter 520 - Calm Following Storm
The past week was on the poor side of average as far as her dyskinesia and ability to stand into the Sara were concerned. Until Thursday.
On Wednesday evening I forgot to change the cassette on her pump and I failed to check for a "D" or "N" I write onto each cassette (through the spy holes I made in the pump carry bags) before turning out the lights. Consequently the cassette was bone dry at 0620 when I came to replace it at 0620 Thursday morning. I calculated that the cassette was empty from about 0500. After replacing the cassette the flow rate was set from the night rate of 2.2 to the day rate of 6.0.. By 0715 her leg dyskinesias were bad and she wanted to get up. She had difficulty standing into the Sara and then onto and off the commode and I strained to assist her. On the pedal machine she was able yo pedal unaided except her left foot was straighter than usual so the toe of her show tended to brush the base of the pedal machine. By 1030 I had trouble helping her stand into the Sara for her to use the loo. By mid afternoon the dyskinesias were bad. At 1600 she removed her cardigan and turned on the wall fan because she was so hot she was sweating. Ambient was about 17C. Her body temperature measured in her right ear was 35.7C. Dyskineasias remained bad through 1700 when I changed the flow rate from 6.0 to 2.2. At 1900 the Wild Dog Carer and I were unable to have her stand from the wheel chair onto the loo, so I used one of the slider boards to move her onto the loo then off onto the commode then off that onto her bed, along with much effort on our parts. I wondered to myself whether this was the beginning of the final slippery slope. Since I have not been placing the FitBit on her right leg in a long time I have no real idea of how long the dyskinesia lasted. At 2100 I checked the pump flow rate and that the cassette had been changed.
Come Friday morning I expected the worst. At 0630 after I set the pump for daytime running and gave her her eye drops she told me she felt she was losing her "balance", and this as she still lay in bed. Expecting the worst I attached the FitBit to her right leg at 0820. Most of the morning she spent attempting to untangle a ball of wool. The Fit Bit shows dyskinesias began about 1400, although I was unaware until 1530 when she called to go to the toilet and I gave her a bolus at 1540 and increased the flow rate from 6.0 to 6.5 at 1545 and by 1545 the dyskinesias ceased, although she was hot and sweaty, needing the fan on.. At 1710 I noted that her head was bobbing. The cassette was replaced at 1855. Around 1900 when the wild Dog Carer arrived she was standing into the Sara without difficulty. Flow rate was changed from 6.5 to 2.2. By 2250 she woke me asking remove the additional quilt, feeling hot and was trembling quickly but the Fit Bit did not record anything. So a surprising day after yesterday.
Saturday began much the same, although she felt extra cold on the pedal machine from 0700 when I placed a blanket over her as well as a knitted poncho. The Fit Bit was off her leg from 0750 to 0900.
I noted at 1300 "No dysks yet" but on looking at the Fit Bit later she had a burst of dyskinesia between approximately 1045 and 1115 but she does not usually bother to tell me. So at 1135 I gave a bolus and the dyskinesias stopped soon afterwards, although that was unusual. Dyskinesias began again at 1215 so the flow rate was increased from 6.0 to 6.5. Dyskinesias began again at 1600, a bolus at 1720 when she was hot and sweaty, and continued until 1900 when she was able to stand into the Sara without assistance.
Today Sunday began well. She commented that when I flushed the side port of the PEG-J fitting she was able to sense the cold water (often she does not) in her stomach and on this occasion she experienced a cold sensation in her shoulders. No pedal exercise today because the Wild Dog Carer (new) had been instructed to come at 0740 instead of 0750. The morning was problem free so we went shopping for 2 hours from 0930. She has been knitting the remainder of the time (now 1530) and is doing so quickly and without mistakes I think. Dyskinesias began at 1430 and a bolus was given almost immediately. She noticed that her left leg was more agitated than the right one. The left began tingling accompanied by an urgency for the loo. At 1445 I increased the flow rate from 6.0 to 6.5.
Now at Sunday 1530 the Fit Bit shows only a few low level pulses. An email on Friday gave us wonderful news of a visit to look forward to next Tuesday week!!
On Wednesday evening I forgot to change the cassette on her pump and I failed to check for a "D" or "N" I write onto each cassette (through the spy holes I made in the pump carry bags) before turning out the lights. Consequently the cassette was bone dry at 0620 when I came to replace it at 0620 Thursday morning. I calculated that the cassette was empty from about 0500. After replacing the cassette the flow rate was set from the night rate of 2.2 to the day rate of 6.0.. By 0715 her leg dyskinesias were bad and she wanted to get up. She had difficulty standing into the Sara and then onto and off the commode and I strained to assist her. On the pedal machine she was able yo pedal unaided except her left foot was straighter than usual so the toe of her show tended to brush the base of the pedal machine. By 1030 I had trouble helping her stand into the Sara for her to use the loo. By mid afternoon the dyskinesias were bad. At 1600 she removed her cardigan and turned on the wall fan because she was so hot she was sweating. Ambient was about 17C. Her body temperature measured in her right ear was 35.7C. Dyskineasias remained bad through 1700 when I changed the flow rate from 6.0 to 2.2. At 1900 the Wild Dog Carer and I were unable to have her stand from the wheel chair onto the loo, so I used one of the slider boards to move her onto the loo then off onto the commode then off that onto her bed, along with much effort on our parts. I wondered to myself whether this was the beginning of the final slippery slope. Since I have not been placing the FitBit on her right leg in a long time I have no real idea of how long the dyskinesia lasted. At 2100 I checked the pump flow rate and that the cassette had been changed.
Come Friday morning I expected the worst. At 0630 after I set the pump for daytime running and gave her her eye drops she told me she felt she was losing her "balance", and this as she still lay in bed. Expecting the worst I attached the FitBit to her right leg at 0820. Most of the morning she spent attempting to untangle a ball of wool. The Fit Bit shows dyskinesias began about 1400, although I was unaware until 1530 when she called to go to the toilet and I gave her a bolus at 1540 and increased the flow rate from 6.0 to 6.5 at 1545 and by 1545 the dyskinesias ceased, although she was hot and sweaty, needing the fan on.. At 1710 I noted that her head was bobbing. The cassette was replaced at 1855. Around 1900 when the wild Dog Carer arrived she was standing into the Sara without difficulty. Flow rate was changed from 6.5 to 2.2. By 2250 she woke me asking remove the additional quilt, feeling hot and was trembling quickly but the Fit Bit did not record anything. So a surprising day after yesterday.
Saturday began much the same, although she felt extra cold on the pedal machine from 0700 when I placed a blanket over her as well as a knitted poncho. The Fit Bit was off her leg from 0750 to 0900.
I noted at 1300 "No dysks yet" but on looking at the Fit Bit later she had a burst of dyskinesia between approximately 1045 and 1115 but she does not usually bother to tell me. So at 1135 I gave a bolus and the dyskinesias stopped soon afterwards, although that was unusual. Dyskinesias began again at 1215 so the flow rate was increased from 6.0 to 6.5. Dyskinesias began again at 1600, a bolus at 1720 when she was hot and sweaty, and continued until 1900 when she was able to stand into the Sara without assistance.
Today Sunday began well. She commented that when I flushed the side port of the PEG-J fitting she was able to sense the cold water (often she does not) in her stomach and on this occasion she experienced a cold sensation in her shoulders. No pedal exercise today because the Wild Dog Carer (new) had been instructed to come at 0740 instead of 0750. The morning was problem free so we went shopping for 2 hours from 0930. She has been knitting the remainder of the time (now 1530) and is doing so quickly and without mistakes I think. Dyskinesias began at 1430 and a bolus was given almost immediately. She noticed that her left leg was more agitated than the right one. The left began tingling accompanied by an urgency for the loo. At 1445 I increased the flow rate from 6.0 to 6.5.
Now at Sunday 1530 the Fit Bit shows only a few low level pulses. An email on Friday gave us wonderful news of a visit to look forward to next Tuesday week!!
posted by Kilpike | 3:46 pm
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