Chapter 339 - Not Sure Where We're Going
What a title for a chapter; does it suggest confusion? Goes hand in hand with this week I suppose, beginning with emptying catheter bags without any leaks, recording quantities in my anal retentive manner, even to noting some "particles" in the otherwise clear 300ml I emptied around 3pm on Monday last. During her Tuesday at the Sheltered Workshop she found the catheter was uncomfortable, although I suspect she found it so most of the time; then at home afterwards I found some coloured drip marks on the bidet seat after she did a poo, whether urine leakage or over spray from the bidet I couldn't determine.
Then the visiting RN came on Wednesday to replace the catheter (it having been in situ almost a month), did a dip stick test to detect another UTI. My order for catheters had not yet arrived so the RN planned to return the following day. Not long after the RN left my catheter order arrived (of course). I cancelled my appointment AGAIN to have my hearing checked and instead made an appointment for her to see Dr I, the GP, who prescribed a course of Ibilex 500 antibiotic. While waiting for the script to be filled at the chemist we went shopping for a water filter at Kmart where she spread eagled herself on the floor; much attention from staff. Then at home, attempting to take one of the antibiotic gelatin capsules she almost choked and not quite chucked up; I tried a teaspoon of chutney, then blackberry jam, then malt extract before she was able to swallow the thing. We must remember to insist on not being given such capsules again. She continues to have difficulty even with the malt.
She was minded by Wild Dog carers (from the Respite place) on Thursday for 12 hours while I jollied off to Big Smoke by sodding train for a lunch with the kids I began work with way back in 1956; a dying breed. Some are planning a 60 year reunion in 2 years; I can only wonder how many will attend. I am definitely an aged old fart now; I forgot, on leaving home in the dark, to change the light weight shoes I use as slippers for my going out & about boots then while walking the streets of Big Smoke I could not be bothered to find a shoe shop. Stuff it. Anyway, the RN returned during the day, swapping out the catheter, using both I ordered because the first she tried failed. After I returned home the contents of her catheter leg bag were not looking good; streaks of blood easily seen. Then a little after 8pm, on the loo for a poo, the catheter came free. We decided to hell with catheters until she saw the urologist K up the 4 lane on Saturday. She went back to using incontinence pants and pads. Each night since we, one or both of us, is rising 3 or 4 times and the new commode/shower chair is parked at a convenient position beside her bed. So far we are no more tired than during the 2 month catheter experience.
By the way, my records show that between March 6th and May 1st she had 7 catheters fitted of which several "failed" on insertion and two "fell out". Various nurses inserted them.
Courtesy of the TACP, we were driven up the 4 lane to see Dr K on a wet and cold day yesterday. We were on time for the appointment, he was running an hour late, we saw him for no more than 15 minutes. He says catheters are a last resort. He has never heard of the laser treatment she had over West in 2000 that "strengthened" the bladder opening. She was offered a Botox treatment for her bladder (in Big Smoke of all damn places, why did we agree with the GP to see this bloke rather than going to Hot Air City?) but first she must have urine and bladder tests here locally. After reading the hand-out material this morning (she didn't want to yesterday) she was in tears, protesting that she won't be able to remain still enough for all this poking and prodding, having catheters poke into several orifices. The only help I was able to give was that it's the responsibility of the doctors to cope with her condition rather than for her to comply with them. Unfortunately, I fear the whole experience will be uncomfortable at least and embarrassing for her. Remember the old statement "specialists know more and more about less and less"? A classic; when we told Dr K. that she was on an apomorphine infusion pump, his immediate comment was "Why, are you in constant pain?" We had to explain that Apomorphine was a PD drug, so at least he learned something by our visit. He noted that the GP Dr I. had mentioned in his referral that the her neurologist Dr M. did not wish her to take Ditropan. She really needs some comforting talk about all this.
Strangely, almost interesting, Since she has not had a catheter inserted she has not felt bloated or bilious. She blamed the catheter for inducing those discomforts ever since they began; I scoffed that a tube stuck up one orifice was unlikely to produce such effects in a different "circuit" in the body. We will see.
I had mentioned to TACP that she had trouble from the weight of bed clothes irritating and causing pain to her toes. Next thing a "bed cradle" appeared to trial from very responsive helpful people. This was a framework which elevated the bed clothes at the foot of the bed. At first she thought she was kicking it so I made that impossible by adjusting the cradle's height as well as placing a pillow against it. To no avail; she decided last night she was better off without the cradle. She made a strange comment one morning; during the night she was sure one foot was kicking the other leg but when she looked, her feet were far apart. Her toes and feet continue to be very painful when touched.
Polly the PD nurse advised that there is a caution that Motilium be limited to 30mg per day because of high blood pressure problems. Motilium is the med to prevent biliousness caused by Apomorphine; my PWP has been taking 60mg per day. I became excited about this. Although the caution may be nothing to worry about, her Motilium has now been reduced by one tablet to 50mg per day. Yet we were told at the beginning of her Apo journey that Motilium should not be required after 6 months or so. Also, she is no longer taking any Sifrol.
Then the visiting RN came on Wednesday to replace the catheter (it having been in situ almost a month), did a dip stick test to detect another UTI. My order for catheters had not yet arrived so the RN planned to return the following day. Not long after the RN left my catheter order arrived (of course). I cancelled my appointment AGAIN to have my hearing checked and instead made an appointment for her to see Dr I, the GP, who prescribed a course of Ibilex 500 antibiotic. While waiting for the script to be filled at the chemist we went shopping for a water filter at Kmart where she spread eagled herself on the floor; much attention from staff. Then at home, attempting to take one of the antibiotic gelatin capsules she almost choked and not quite chucked up; I tried a teaspoon of chutney, then blackberry jam, then malt extract before she was able to swallow the thing. We must remember to insist on not being given such capsules again. She continues to have difficulty even with the malt.
She was minded by Wild Dog carers (from the Respite place) on Thursday for 12 hours while I jollied off to Big Smoke by sodding train for a lunch with the kids I began work with way back in 1956; a dying breed. Some are planning a 60 year reunion in 2 years; I can only wonder how many will attend. I am definitely an aged old fart now; I forgot, on leaving home in the dark, to change the light weight shoes I use as slippers for my going out & about boots then while walking the streets of Big Smoke I could not be bothered to find a shoe shop. Stuff it. Anyway, the RN returned during the day, swapping out the catheter, using both I ordered because the first she tried failed. After I returned home the contents of her catheter leg bag were not looking good; streaks of blood easily seen. Then a little after 8pm, on the loo for a poo, the catheter came free. We decided to hell with catheters until she saw the urologist K up the 4 lane on Saturday. She went back to using incontinence pants and pads. Each night since we, one or both of us, is rising 3 or 4 times and the new commode/shower chair is parked at a convenient position beside her bed. So far we are no more tired than during the 2 month catheter experience.
By the way, my records show that between March 6th and May 1st she had 7 catheters fitted of which several "failed" on insertion and two "fell out". Various nurses inserted them.
Courtesy of the TACP, we were driven up the 4 lane to see Dr K on a wet and cold day yesterday. We were on time for the appointment, he was running an hour late, we saw him for no more than 15 minutes. He says catheters are a last resort. He has never heard of the laser treatment she had over West in 2000 that "strengthened" the bladder opening. She was offered a Botox treatment for her bladder (in Big Smoke of all damn places, why did we agree with the GP to see this bloke rather than going to Hot Air City?) but first she must have urine and bladder tests here locally. After reading the hand-out material this morning (she didn't want to yesterday) she was in tears, protesting that she won't be able to remain still enough for all this poking and prodding, having catheters poke into several orifices. The only help I was able to give was that it's the responsibility of the doctors to cope with her condition rather than for her to comply with them. Unfortunately, I fear the whole experience will be uncomfortable at least and embarrassing for her. Remember the old statement "specialists know more and more about less and less"? A classic; when we told Dr K. that she was on an apomorphine infusion pump, his immediate comment was "Why, are you in constant pain?" We had to explain that Apomorphine was a PD drug, so at least he learned something by our visit. He noted that the GP Dr I. had mentioned in his referral that the her neurologist Dr M. did not wish her to take Ditropan. She really needs some comforting talk about all this.
Strangely, almost interesting, Since she has not had a catheter inserted she has not felt bloated or bilious. She blamed the catheter for inducing those discomforts ever since they began; I scoffed that a tube stuck up one orifice was unlikely to produce such effects in a different "circuit" in the body. We will see.
I had mentioned to TACP that she had trouble from the weight of bed clothes irritating and causing pain to her toes. Next thing a "bed cradle" appeared to trial from very responsive helpful people. This was a framework which elevated the bed clothes at the foot of the bed. At first she thought she was kicking it so I made that impossible by adjusting the cradle's height as well as placing a pillow against it. To no avail; she decided last night she was better off without the cradle. She made a strange comment one morning; during the night she was sure one foot was kicking the other leg but when she looked, her feet were far apart. Her toes and feet continue to be very painful when touched.
Polly the PD nurse advised that there is a caution that Motilium be limited to 30mg per day because of high blood pressure problems. Motilium is the med to prevent biliousness caused by Apomorphine; my PWP has been taking 60mg per day. I became excited about this. Although the caution may be nothing to worry about, her Motilium has now been reduced by one tablet to 50mg per day. Yet we were told at the beginning of her Apo journey that Motilium should not be required after 6 months or so. Also, she is no longer taking any Sifrol.
posted by Kilpike | 1:17 pm
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