Chapter 333 - The Busyness of Home
I brought her home Thursday before last, the 13th March. While taking several bags of clothing, clean and soiled, to the car prior to putting her into it, I realised some of the conveniences of living in a country town; parking (fee-less) at the side door of the hospital in the disabled slot, five minutes drive from home, a brand new re-hab section of hospital (we hear there are plans to modernise the remainder but in our lifetimes?). Our OT who instigated her entering Re-hab accompanied us to the car to supervise her getting in bum first, in a motherly way. She left hospital with several days supply of antibiotics to take plus a script for more should such be needed; they haven't. Plus several leg and overnight bags for the catheter. I'm given the soft message that she is likely to remain with a catheter till day's end. I've since ordered in ten of each and although the overnight bag can be used for much longer than one week, one of the RN's who is calling on us at home suggests replacing both bags weekly to avoid infection. The catheter itself is to be replaced monthly but I'm unsure, forgotten, who or where the replacement takes place. She will be managed for 12 weeks by people from Temporary Aged Care Program who will organise daily showering at 8am, regular visits from an RN, Physio, Social Worker, a sitter should I need to be away, transport if required, shopping if required, house cleaning if required, etc. People keep coming out of the wood work (or a cone of silence ;-) to help her; we had no idea that such help was available for her.
At 8am the next day, Friday, someone arrived to shower her. She is a little uncomfortable about this, for several mornings following she tended to be in the shower before help arrived; she was unable to see the danger of showering without assistance, even mine at times, and now after a week of help I think she has mellowed, not being so keen to have the process over before help arrives. I replaced the Apo syringe prior to the shower help arriving so the pump was placed into its little sarcophagus-like box with tape wrapped around same for water proofing. A couple of mornings she was quite active and capable, the remainder very stooped and shuffling. Around lunch time this first day I became stressed because her "leg" bag had not filled from empty at 7.15am even though she had drunk at least a litre of fluids. By 2.15pm there were signs of leakage, the bag was still not filling, so, not quite in a panic, I rang the TACP number for advice. The suggestion was that the thin blue hose from the catheter was possible kinked. I found no kink as far along its length I was able to explore; as I spoke to the RN the bag began to fill, probably due to her movement and partially standing while I explored. Later it was explained that the small hole in the end of the catheter can be covered by the bladder wall, thus preventing flow.
On the Saturday afternoon the lady her showered her on Friday came to sit with her while I spoke and demonstrated my new 3D printer at our Curmudgeons Computer Club. Having competent company for her was a great relief to me during my absence. After I returned home we went grocery shopping, although she remained in the car. That evening we noticed bright red spots around her right ankle, not itchy or painful, fading as the week progressed; forgot to tell anyone about the rash, now gone.
Her leg and foot tingling have mostly gone, to be replaced by occasional burning sensations, sometimes not long after taking her conventional meds. One new symptom - she detects that her legs are kicking sideways or actually dancing yet when she looks her legs are stationary. I have felt them without detecting the merest tremor while she feels the sensation of dancing.
She has not mentioned any delusions or hallucinations since returning home. While in hospital she described to staff that there had been a person sitting in her walker near her bedside, also a fire extinguisher that became a little girl; this resulted in the resident speaking to her Neuro in Hot Air City then deciding to reduce her Apo back to 9ml since such are side effects of the Apo. I am pleased no one informed me about this because I maintained her dose at 10ml.
On Monday at 7am she developed a "squeak" in her throat, a "burning up" feeling from her toes to her bum yet her temperature was 36.3 and her BP 148/92 73 and 15 minutes later she felt OK. The manager of TACP had arranged a GP appointment for us at another surgery after we told him that the GP's at the other place changed frequently. In an old refurbished house, we are not impressed with access or parking. In the waiting room we were each presented with 3 pages of medical history questionnaire unable to be completed on the spot (I returned the next day with what we had not completed). Our time with the GP was mostly taken up with describing PD matters, to the point where she became stressed that her 2pm meds time was approaching so we had to leave, by the back door since that provided almost level access back to the street.
Tuesday saw her return for a day respite at the "Sheltered workshop". That evening she began to feel ill, much flatulence at both ends. This has continued since.
On Wednesday morning she woke a little after midnight with a painful throb in her right hip and lower leg and Ice gel was applied. Quite vigorous dyskinesia in the right leg until she fell asleep about an hour after taking two Panamax. After waking around 2am for a Sinemet she was unable to sleep for quite some time. This has been her worst night since the catheter was fitted.
After breakfast on Wednesday she had a headache across her forehead from temple to temple. At 10am the Social worker visited, followed by one of the RN's who showed me how to replace the leg bag, since I did not know when the hospital fitted that one and a almost a week was gone since leaving hospital. I ordered a stock of both leg and overnight bags which arrived next day. Then in the afternoon her hairdresser arrived to cut her hair and mine as well, since that saves me wasting time at a barber's down the street, and my hair is cut better to boot! That evening she needed the wheelchair to get to the loo and when into bed her feet began "motionless dancing". When I emptied her leg bag before fitting the overnight bag, I noticed one little "tadpole" of black, probably blood, in her urine. None since.
Also on Wednesday we made a quick trip to her favourite clothing shop where she bought a number of slinky long dresses hoping such will cover the bag on her leg whenever we go out, since most of the slacks she wares are too narrow to permit easy access to the leg bag.
We were driven on Thursday to Hot Air City to see Polly PD Nurse. Fantastic! I reclined in the rear, dozing and reading, occasionally being interrupted by comments from the front seat. The best part was not having to get her from the multi-story car park into the hospital - we were both much more relaxed for the appointment. We decided to maintain the existing meds and 10ml of Apo until direction for change is given by the Neuro. Polly will obtain a standby Apo pump for us, in case of failure this far from Hot Air City. Also, a PD data monitor is available, a PD Kinetigraph Logger, worn on the wrist like a Dick Tracy communicator, which will be loaned to her for analysis of her PD characteristics. I'm looking forward to seeing the device, although I wonder whether her slight wrist activity will reflect what happens to her legs. Polly agreed that replacing the Apo syringe on going to bed at night will help me minimise the down time of the pump, thus medication, which should be beneficial to her as well as reducing the amount of activity each morning. So from here on the pump is changed each evening. And when we receive a second pump I can prepare it before hand so the changeover will happen almost instantly. Using only one pump, at least 10 minutes is required for the pump piston to return back into the housing before a filled syringe can be fitted.
Around 4am Friday morning she needed the wheelchair to get to the loo; much wind, felt bloated, passed some lumps (she calls them "pebbles"), some very soft. I gave her glasses of soda water which eased her bloatedness. The RN who visited suggested Mylanta, so I bought some at the chemist while our cleaner was here.
She says the flatulence has eased by this morning, Saturday, even though she has made several trips to the loo simply to make loud reports. She also says there is slight burning in her throat (reflux?) so I gave her another Mylanta dose. A matter to discuss with our new GP on Thursday when we have flu shots. She is more her normal self today, sitting at her laptop catching up on endless emails, interrupted occasionally by reports in the loo; with some pebbles. Down the street later for food stuffs and, I suspect, more slinky clothes.
At 8am the next day, Friday, someone arrived to shower her. She is a little uncomfortable about this, for several mornings following she tended to be in the shower before help arrived; she was unable to see the danger of showering without assistance, even mine at times, and now after a week of help I think she has mellowed, not being so keen to have the process over before help arrives. I replaced the Apo syringe prior to the shower help arriving so the pump was placed into its little sarcophagus-like box with tape wrapped around same for water proofing. A couple of mornings she was quite active and capable, the remainder very stooped and shuffling. Around lunch time this first day I became stressed because her "leg" bag had not filled from empty at 7.15am even though she had drunk at least a litre of fluids. By 2.15pm there were signs of leakage, the bag was still not filling, so, not quite in a panic, I rang the TACP number for advice. The suggestion was that the thin blue hose from the catheter was possible kinked. I found no kink as far along its length I was able to explore; as I spoke to the RN the bag began to fill, probably due to her movement and partially standing while I explored. Later it was explained that the small hole in the end of the catheter can be covered by the bladder wall, thus preventing flow.
On the Saturday afternoon the lady her showered her on Friday came to sit with her while I spoke and demonstrated my new 3D printer at our Curmudgeons Computer Club. Having competent company for her was a great relief to me during my absence. After I returned home we went grocery shopping, although she remained in the car. That evening we noticed bright red spots around her right ankle, not itchy or painful, fading as the week progressed; forgot to tell anyone about the rash, now gone.
Her leg and foot tingling have mostly gone, to be replaced by occasional burning sensations, sometimes not long after taking her conventional meds. One new symptom - she detects that her legs are kicking sideways or actually dancing yet when she looks her legs are stationary. I have felt them without detecting the merest tremor while she feels the sensation of dancing.
She has not mentioned any delusions or hallucinations since returning home. While in hospital she described to staff that there had been a person sitting in her walker near her bedside, also a fire extinguisher that became a little girl; this resulted in the resident speaking to her Neuro in Hot Air City then deciding to reduce her Apo back to 9ml since such are side effects of the Apo. I am pleased no one informed me about this because I maintained her dose at 10ml.
On Monday at 7am she developed a "squeak" in her throat, a "burning up" feeling from her toes to her bum yet her temperature was 36.3 and her BP 148/92 73 and 15 minutes later she felt OK. The manager of TACP had arranged a GP appointment for us at another surgery after we told him that the GP's at the other place changed frequently. In an old refurbished house, we are not impressed with access or parking. In the waiting room we were each presented with 3 pages of medical history questionnaire unable to be completed on the spot (I returned the next day with what we had not completed). Our time with the GP was mostly taken up with describing PD matters, to the point where she became stressed that her 2pm meds time was approaching so we had to leave, by the back door since that provided almost level access back to the street.
Tuesday saw her return for a day respite at the "Sheltered workshop". That evening she began to feel ill, much flatulence at both ends. This has continued since.
On Wednesday morning she woke a little after midnight with a painful throb in her right hip and lower leg and Ice gel was applied. Quite vigorous dyskinesia in the right leg until she fell asleep about an hour after taking two Panamax. After waking around 2am for a Sinemet she was unable to sleep for quite some time. This has been her worst night since the catheter was fitted.
After breakfast on Wednesday she had a headache across her forehead from temple to temple. At 10am the Social worker visited, followed by one of the RN's who showed me how to replace the leg bag, since I did not know when the hospital fitted that one and a almost a week was gone since leaving hospital. I ordered a stock of both leg and overnight bags which arrived next day. Then in the afternoon her hairdresser arrived to cut her hair and mine as well, since that saves me wasting time at a barber's down the street, and my hair is cut better to boot! That evening she needed the wheelchair to get to the loo and when into bed her feet began "motionless dancing". When I emptied her leg bag before fitting the overnight bag, I noticed one little "tadpole" of black, probably blood, in her urine. None since.
Also on Wednesday we made a quick trip to her favourite clothing shop where she bought a number of slinky long dresses hoping such will cover the bag on her leg whenever we go out, since most of the slacks she wares are too narrow to permit easy access to the leg bag.
We were driven on Thursday to Hot Air City to see Polly PD Nurse. Fantastic! I reclined in the rear, dozing and reading, occasionally being interrupted by comments from the front seat. The best part was not having to get her from the multi-story car park into the hospital - we were both much more relaxed for the appointment. We decided to maintain the existing meds and 10ml of Apo until direction for change is given by the Neuro. Polly will obtain a standby Apo pump for us, in case of failure this far from Hot Air City. Also, a PD data monitor is available, a PD Kinetigraph Logger, worn on the wrist like a Dick Tracy communicator, which will be loaned to her for analysis of her PD characteristics. I'm looking forward to seeing the device, although I wonder whether her slight wrist activity will reflect what happens to her legs. Polly agreed that replacing the Apo syringe on going to bed at night will help me minimise the down time of the pump, thus medication, which should be beneficial to her as well as reducing the amount of activity each morning. So from here on the pump is changed each evening. And when we receive a second pump I can prepare it before hand so the changeover will happen almost instantly. Using only one pump, at least 10 minutes is required for the pump piston to return back into the housing before a filled syringe can be fitted.
Around 4am Friday morning she needed the wheelchair to get to the loo; much wind, felt bloated, passed some lumps (she calls them "pebbles"), some very soft. I gave her glasses of soda water which eased her bloatedness. The RN who visited suggested Mylanta, so I bought some at the chemist while our cleaner was here.
She says the flatulence has eased by this morning, Saturday, even though she has made several trips to the loo simply to make loud reports. She also says there is slight burning in her throat (reflux?) so I gave her another Mylanta dose. A matter to discuss with our new GP on Thursday when we have flu shots. She is more her normal self today, sitting at her laptop catching up on endless emails, interrupted occasionally by reports in the loo; with some pebbles. Down the street later for food stuffs and, I suspect, more slinky clothes.
posted by Kilpike | 12:10 pm
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