Chapter 442 - A Day to Remember
Yesterday, Friday we drove to the club where we usually meet the Ugly Sisters. I was anxious about going; the last time we left early, having hardly eaten any lunch, for her dyskinesias were very bad. Yesterday was markedly different. She ate the majority of a fisherman's basket, a citrus tart with much ice cream and a small milkshake. Before we left she used her bowels, almost a miracle, for at home doing so is a great difficulty. We arrived at 1100 and left at 1500 without me noticing any dyskinesias. Neither of us ate after returning home. We were early to bed but she had difficulty getting to sleep and by 2230 her breathing was rapid, feeling hot, fast leg dyskinesias, said she was having a panic attack so I took the easy way out by giving her a Kalma tablet.
Her daytime Duodopa dose rate continues at 5.0 with a couple of experiments along the way which I won't bother to describe. I have copious pages of notes since 18th December. Attempting to transcribe them is a task I am unable to face.
Three errors are worth describing though.
1. On the morning of 30th December I woke late to the sound of "Pump Off" beeps; I think her left elbow had rested on the pump stop button during the night long enough to stop the pump; I later compared the weight of the cassette that had been in use to a brand new one; the difference was about 10 gms.
2. The night of January 3rd I went to sleep without decreasing the flow rate from 5.0 to 2.0 so at 0200 she woke me; her whole body writhed as if a reptile, legs arms and head. I turned off the pump until 0330 when I restarted it at 2.0 ml/hr. She asked for soluble Panadol so I gave her two. She was asleep from 0300. At daylight she told me a bird sat on my windowsill and tweeted five times.
3. In the early hours of Thursday 5th January she kept waking me by yelling, laughing, speaking, snorting in her sleep. At 0615 I found her still running pump disconnected from the PEG tube and placed on the upper shelf her trolley, from where it dripped onto the lower shelf, fortunately none onto the carpet. I connected and started the pump on 5.0 plus a Morning Dose.
Following a routine visit to the optometrist her eye pressures were still over 20; a report was sent to the specialist who wrote her a letter with scripts for AZOPT twice a day, Carbomer four times a day. She continues with Ganfort pf 0.3/5 one a day and Poly Visc once a day. I made a schedule to guide me with applying these yet I still forget and delay doses. Also bought another pair of glasses.
She has Movicol once a day with fruit juice but she rejects crushed vitamin tablets and liquid vitamins mixed together in fruit juice, yogurt or apple sauce; our chemist says this is probably due to the vitamin D which he says tastes dreadful.
In December we sent not one Xmas card; she can't write legibly and I refused to make the hollow religious token gestures demanded of the season; I regret severing this once a year contact with so many; but most respond in kind with a process requiring little thought, just routine. Cards with stars, fir trees, snow flakes, reindeer, angels and red suited fat people are just crap.
Regurgitating all this is depressing me. I stop.
Her daytime Duodopa dose rate continues at 5.0 with a couple of experiments along the way which I won't bother to describe. I have copious pages of notes since 18th December. Attempting to transcribe them is a task I am unable to face.
Three errors are worth describing though.
1. On the morning of 30th December I woke late to the sound of "Pump Off" beeps; I think her left elbow had rested on the pump stop button during the night long enough to stop the pump; I later compared the weight of the cassette that had been in use to a brand new one; the difference was about 10 gms.
2. The night of January 3rd I went to sleep without decreasing the flow rate from 5.0 to 2.0 so at 0200 she woke me; her whole body writhed as if a reptile, legs arms and head. I turned off the pump until 0330 when I restarted it at 2.0 ml/hr. She asked for soluble Panadol so I gave her two. She was asleep from 0300. At daylight she told me a bird sat on my windowsill and tweeted five times.
3. In the early hours of Thursday 5th January she kept waking me by yelling, laughing, speaking, snorting in her sleep. At 0615 I found her still running pump disconnected from the PEG tube and placed on the upper shelf her trolley, from where it dripped onto the lower shelf, fortunately none onto the carpet. I connected and started the pump on 5.0 plus a Morning Dose.
Following a routine visit to the optometrist her eye pressures were still over 20; a report was sent to the specialist who wrote her a letter with scripts for AZOPT twice a day, Carbomer four times a day. She continues with Ganfort pf 0.3/5 one a day and Poly Visc once a day. I made a schedule to guide me with applying these yet I still forget and delay doses. Also bought another pair of glasses.
She has Movicol once a day with fruit juice but she rejects crushed vitamin tablets and liquid vitamins mixed together in fruit juice, yogurt or apple sauce; our chemist says this is probably due to the vitamin D which he says tastes dreadful.
In December we sent not one Xmas card; she can't write legibly and I refused to make the hollow religious token gestures demanded of the season; I regret severing this once a year contact with so many; but most respond in kind with a process requiring little thought, just routine. Cards with stars, fir trees, snow flakes, reindeer, angels and red suited fat people are just crap.
Regurgitating all this is depressing me. I stop.
posted by Kilpike | 12:17 pm
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