Chapter 383 - In a Bog
The time is now 0310; I woke perhaps an hour ago, unable to return to sleep I decided to post about her introduction to Duodopa.
Light rain fell as we left home about 1130 on Monday 20th April. By the time we reached the southern edge of Big Smoke, about where the highway widens to 4 lanes each way the lane lines were almost impossible to see through rain and spray. We had stopped for my comfort, not hers, at that trashy rest stop where the loos are still in portable cabins not disability friendly, and had a little to eat from what she had packed. She was stressed and in need of a comfort stop on the last leg of the trip so I stopped at a MacDonalds and wheel chaired her through the rain. We remained there for quite some time hoping for the rain to ease, it didn't.
Arriving at the motel near West Beer hospital about 1515 we found the Disabled room I had booked to be very "wheel chair" unfriendly. There was insufficient room for me to walk between wheel chair and the twin beds, but that was intended only for the first night because she was intended to be in a hospital bed the next night while I remained at the motel in a conventional room.
On Tuesday she was fitted with a nasal tube and then remain in hospital. Unfortunately, a bed was unavailable for her, and since there was no disabled room available at the motel, a night at the Lodge in the hospital grounds was organised. I had avoided booking in there because the amenities were communal and down the hall. That evening, having walked back in the rain to the motel (where I left the car) for some clothing, I became lost amongst hospital buildings and multi-story car parks for almost an hour in the rain.
I checked out of the $170 per night motel into the hospital's $43 per night lodge where I have remained. I was given a car pass to enter the hospital where parking is at a premium. A bed became available late afternoon for her.
So it was Thursday 0600 before she was introduced to Duodopa after all other meds were ceased, except the Deralin, the blood pressure pill Dr D, years ago, had introduced her to for "hand tremors" and which no doctor (including neuros) had had the courage to have her discontinue, although puzzled about it. I suspect they all assumed she was taking it for blood pressure reasons.
She is given two Duodopa cartridges a day at 0600 and 1500 and the pump is detached at 2200. A Sinemet CR 200/50 carries her through the night. We received instruction on a demonstration Duodopa pump. I was very pleased to see her walking, pushing her walker along the hospital corridors.
Friday morning she reported seeing a crowd of foreign nationals in bright clothing during the night, seemingly triggered by one or two visiting the patient in the adjacent bed. Also she had some messy bowel motions which later caused her to be examined for "muscle tone" in that area. She was able to push her walker all the way down to the food hall of the hospital. A sister and husband visited her at lunch time.
More loose bowel events on Saturday. Her BP was over 180 today after reducing Deralin from 5 to 4 tablets. Although her feet were not painful to touch, tingling has returned. In early evening, after visiting friends, I found her in bed, rather than sitting in a chair.
On Sunday I saw her early in the morning before spending the day with our son and family. When I returned in late afternoon she seemed "better".
Then on Monday I walked to the private hospital to get a CD copy of the second MRI scans left behind at the neuro's last October. Around lunch time she pushed her walker to the hospital lifts and back. A little after 1400 she was unable to rise from a chair to go to the loo.
Tuesday 0900 she pushed her walker some 4 times around the ward before her left foot became noticeably twisted and a fall looked imminent. At 1030 she walked to and from the shower so the Duodopa was off for 1/2 an hour. At 1130 she felt shaky, her knees wobbled, both feet tingled and her stomach was "churned". She pushed her walker around the nurse's station, needing to sit part way around then returned to her bedside chair. Her left knee burned and her toes were stinging. Another walk at 1250, nearly toppling backwards as she began sitting in a chair. At 1500 J had her replace the Duodopa cartridge followed by a walk around the nurse's station after which I rubbed behind her left knee which was painful.
At 0815 Wednesday a cannula was inserted in her arm in preparation for the PEG tube operation at 1100. At 1230 J rang me that the procedure had gone well. When I saw her at 1350 back in the ward she sneezed a couple of times. By 1430 she had a slight headache. At 1615 she went to the loo, transported on her walker. She was asleep by 1715 when a meal was delivered. She would normally be discharged on Friday following the fitting of the PEG but Dr F thought it best for her to remain over the weekend for further Duodopa flow adjustments. I was quite happy for her to extend her hospital stay, since, in my opinion, after an initial improvement in her symptoms she was deteriorating. At this point she has been on Duodopa for a week.
When I saw her at 0800 on Thursday she was dozing, dreamy, after not sleeping until 0400. at times her feet were rotating. Pushing her walker to the lifts at 1125 resulted in burning behind her left knee. At 1150 M. ran through operations on the pump, she is to handle the pump as much as possible, stopping and starting, changing the cassette, flushing the tubing. At 1500 she r\took herself to the loo but a nurse had to help her out. She changed the Duodopa cassette. Around 1530 she was unable to rise from a chair at the request of M. who then gave her a bolus dose which did not help her stand from the chair. M. showed me how to change the pump settings, then raised the flow from 6.3 to 6.4.
On Friday when I arrived at 0820 the pump was showing the low battery warning so I gave her a bolus and replaced the batteries. At 0840 she was unable to stand from the bed so I took her to the loo on her walker then removed to pump before she showered. Pump back on at 0915. At 0955 her left leg was burning from the big toe up to the knee, the right foot tingled, both legs were stationary but her mouth and chin wobbled. By 1010 her left leg no longer burned but started again by 1016. Her right leg tingling stopped and started at the same times. At 1100 she pushed her walker to the lifts then returned after drinking a bottle of chocolate milk. At 1340 when she wanted the loo I gave her a bolus dose, then both feet tingled before she pushed the walker to the loo but I had to get her onto the walker seat before pushing her back to the bedside where she wished to lay down. Her eyes had rouble focusing, a slight headache, right leg tingled, she said her left leg was "taking leaps" and pulsing but this was not visible to me by sight or touch. Her mouth was dry. She slept. Around 1440 a nurse brought a new cassette which I fitted at 1500 and a few minutes later a high pressure alarm occurred. While I was trouble shooting the problem she became distressed. I found that the hose clamp on the new cassette was closed, preventing flow. Just as I had the pump working again, J appeared so I suggested perhaps that the clamp had been a problem solving exercise for us; she assured me that was not the case, and gave another bolus. By 1530 both legs were burning from feet to knees. She pushed her walker to the loo at 1600 where I changed her pants and helped her into her dressing gown. After snoozing in a chair for a while she said her left leg pulsated, although I could not see it. She said tilting her head towards the right causes her vision to be fuzzy which lessens tilting her head to the left. Her head feels heavy when tilting it forwards, lighter going forwards.
We expect her to be discharged on Monday but we will stay in the Lodge over Tuesday because she has to attend a clinic to check on the PEG tube Wednesday morning. Also she has not yet had a scan to ensure that the tube is positioned correctly.
Just now I wonder whether Duodopa is successful for her.
Before she was admitted to West Beer my right hip had stabbing pains, almost causing me to fall several times; since I have not been physically assisting her that pain has mostly eased, so I presume incorrectly helping her to transfer between wheel chair and loo or bed was causing me serious problems.
Light rain fell as we left home about 1130 on Monday 20th April. By the time we reached the southern edge of Big Smoke, about where the highway widens to 4 lanes each way the lane lines were almost impossible to see through rain and spray. We had stopped for my comfort, not hers, at that trashy rest stop where the loos are still in portable cabins not disability friendly, and had a little to eat from what she had packed. She was stressed and in need of a comfort stop on the last leg of the trip so I stopped at a MacDonalds and wheel chaired her through the rain. We remained there for quite some time hoping for the rain to ease, it didn't.
Arriving at the motel near West Beer hospital about 1515 we found the Disabled room I had booked to be very "wheel chair" unfriendly. There was insufficient room for me to walk between wheel chair and the twin beds, but that was intended only for the first night because she was intended to be in a hospital bed the next night while I remained at the motel in a conventional room.
On Tuesday she was fitted with a nasal tube and then remain in hospital. Unfortunately, a bed was unavailable for her, and since there was no disabled room available at the motel, a night at the Lodge in the hospital grounds was organised. I had avoided booking in there because the amenities were communal and down the hall. That evening, having walked back in the rain to the motel (where I left the car) for some clothing, I became lost amongst hospital buildings and multi-story car parks for almost an hour in the rain.
I checked out of the $170 per night motel into the hospital's $43 per night lodge where I have remained. I was given a car pass to enter the hospital where parking is at a premium. A bed became available late afternoon for her.
So it was Thursday 0600 before she was introduced to Duodopa after all other meds were ceased, except the Deralin, the blood pressure pill Dr D, years ago, had introduced her to for "hand tremors" and which no doctor (including neuros) had had the courage to have her discontinue, although puzzled about it. I suspect they all assumed she was taking it for blood pressure reasons.
She is given two Duodopa cartridges a day at 0600 and 1500 and the pump is detached at 2200. A Sinemet CR 200/50 carries her through the night. We received instruction on a demonstration Duodopa pump. I was very pleased to see her walking, pushing her walker along the hospital corridors.
Friday morning she reported seeing a crowd of foreign nationals in bright clothing during the night, seemingly triggered by one or two visiting the patient in the adjacent bed. Also she had some messy bowel motions which later caused her to be examined for "muscle tone" in that area. She was able to push her walker all the way down to the food hall of the hospital. A sister and husband visited her at lunch time.
More loose bowel events on Saturday. Her BP was over 180 today after reducing Deralin from 5 to 4 tablets. Although her feet were not painful to touch, tingling has returned. In early evening, after visiting friends, I found her in bed, rather than sitting in a chair.
On Sunday I saw her early in the morning before spending the day with our son and family. When I returned in late afternoon she seemed "better".
Then on Monday I walked to the private hospital to get a CD copy of the second MRI scans left behind at the neuro's last October. Around lunch time she pushed her walker to the hospital lifts and back. A little after 1400 she was unable to rise from a chair to go to the loo.
Tuesday 0900 she pushed her walker some 4 times around the ward before her left foot became noticeably twisted and a fall looked imminent. At 1030 she walked to and from the shower so the Duodopa was off for 1/2 an hour. At 1130 she felt shaky, her knees wobbled, both feet tingled and her stomach was "churned". She pushed her walker around the nurse's station, needing to sit part way around then returned to her bedside chair. Her left knee burned and her toes were stinging. Another walk at 1250, nearly toppling backwards as she began sitting in a chair. At 1500 J had her replace the Duodopa cartridge followed by a walk around the nurse's station after which I rubbed behind her left knee which was painful.
At 0815 Wednesday a cannula was inserted in her arm in preparation for the PEG tube operation at 1100. At 1230 J rang me that the procedure had gone well. When I saw her at 1350 back in the ward she sneezed a couple of times. By 1430 she had a slight headache. At 1615 she went to the loo, transported on her walker. She was asleep by 1715 when a meal was delivered. She would normally be discharged on Friday following the fitting of the PEG but Dr F thought it best for her to remain over the weekend for further Duodopa flow adjustments. I was quite happy for her to extend her hospital stay, since, in my opinion, after an initial improvement in her symptoms she was deteriorating. At this point she has been on Duodopa for a week.
When I saw her at 0800 on Thursday she was dozing, dreamy, after not sleeping until 0400. at times her feet were rotating. Pushing her walker to the lifts at 1125 resulted in burning behind her left knee. At 1150 M. ran through operations on the pump, she is to handle the pump as much as possible, stopping and starting, changing the cassette, flushing the tubing. At 1500 she r\took herself to the loo but a nurse had to help her out. She changed the Duodopa cassette. Around 1530 she was unable to rise from a chair at the request of M. who then gave her a bolus dose which did not help her stand from the chair. M. showed me how to change the pump settings, then raised the flow from 6.3 to 6.4.
On Friday when I arrived at 0820 the pump was showing the low battery warning so I gave her a bolus and replaced the batteries. At 0840 she was unable to stand from the bed so I took her to the loo on her walker then removed to pump before she showered. Pump back on at 0915. At 0955 her left leg was burning from the big toe up to the knee, the right foot tingled, both legs were stationary but her mouth and chin wobbled. By 1010 her left leg no longer burned but started again by 1016. Her right leg tingling stopped and started at the same times. At 1100 she pushed her walker to the lifts then returned after drinking a bottle of chocolate milk. At 1340 when she wanted the loo I gave her a bolus dose, then both feet tingled before she pushed the walker to the loo but I had to get her onto the walker seat before pushing her back to the bedside where she wished to lay down. Her eyes had rouble focusing, a slight headache, right leg tingled, she said her left leg was "taking leaps" and pulsing but this was not visible to me by sight or touch. Her mouth was dry. She slept. Around 1440 a nurse brought a new cassette which I fitted at 1500 and a few minutes later a high pressure alarm occurred. While I was trouble shooting the problem she became distressed. I found that the hose clamp on the new cassette was closed, preventing flow. Just as I had the pump working again, J appeared so I suggested perhaps that the clamp had been a problem solving exercise for us; she assured me that was not the case, and gave another bolus. By 1530 both legs were burning from feet to knees. She pushed her walker to the loo at 1600 where I changed her pants and helped her into her dressing gown. After snoozing in a chair for a while she said her left leg pulsated, although I could not see it. She said tilting her head towards the right causes her vision to be fuzzy which lessens tilting her head to the left. Her head feels heavy when tilting it forwards, lighter going forwards.
We expect her to be discharged on Monday but we will stay in the Lodge over Tuesday because she has to attend a clinic to check on the PEG tube Wednesday morning. Also she has not yet had a scan to ensure that the tube is positioned correctly.
Just now I wonder whether Duodopa is successful for her.
Before she was admitted to West Beer my right hip had stabbing pains, almost causing me to fall several times; since I have not been physically assisting her that pain has mostly eased, so I presume incorrectly helping her to transfer between wheel chair and loo or bed was causing me serious problems.
posted by Kilpike | 6:29 am
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