Chapter 394 - A Delaying Disappointment.
We wonder how soon she will be contacted to appear at Hot Air City hospital to undergo her L5 stenosis surgery. Early this week I rang to ask, and was called back in the afternoon "She is 57 days into her waiting period of 90 days which has been extended by an additional 60 days due to Dr M's workload." This response motivated me to send a FAX to her neurologist asking for a referral to another surgeon, pointing out that we are covered by a highly priced private fund. I am puzzled that spinal surgery that may, just may only, help her to walk again, which she has not done unaided since her fall when she was in West Beer hospital at the beginning of May, be classified as "elective".
On Monday I took her to see the Practice Nurse J. at our GP's. J. was unable to inspect what I thought to be the beginnings of a bed sore because there was nowhere for her to lay down for the area to be inspected, so a referral to a Community Health nurse was arranged. Meanwhile I was to keep the area protected and dry (no Calmoseptine!) but when Community Nurse E. arrived on Wednesday the area was almost without blemish, no broken skin and to leave it uncovered. It was pointed out that he gauze I had over the area had bunched, therefore likely to cause further problems.
The reduction in pump flow rate from 6.6 to 6.4 mL/hr seemed to improve her condition early in the week, measured objectively by how much she kicked and the ease of handling her on and off the loo. Yesterday Wild Dog called me to collect her from Respite; her dyskinetic kickings had begun around 2PM and were too much for her to tolerate by 3PM. So this morning I reduced the flow rate further, from 6.4 to 6.2 mL/hr after re-reading instructions provided by West Beer suggesting the normal (whatever the hell normal may be) flow rate is between 2 and 6. Reminds me of our bitter experience gained at the specialised clinic down in Batman City when she suffered very bad panic attacks following discharge due to the quantity of anti-Parkinson meds given; then a local specialist seriously advised reducing the quantity, thus restoring her to an almost normal condition. As I must have said before, it's one thing to prescribe medications during hospital stays, or at brief clinic or consulting room check-ups but such situations are abnormal; experts should view patients over a 24 hour period in a typical environment, at home that is. We see her neurologist, Dr F., next week at 3PM, about the time her legs kick steadily if not violently. Unless I reduce the flow rate to an amount to eliminate dyskinesias.
No progress with a lifting device. The daily care supervisor from Wild Dog, involved by the OT, has been away for a week. I think the idea was for Wild Dog to loan or hire a lifter to us for trial.
Nurses, physios, OT's are all being told she sits on the loo for extended periods attempting to poop. She has the feeling that "something is there", about to come. I need to rouse on her to return her to her wheel chair. One day I simply left her alone; she remained en-throned for 3 hours. I tell her her mild haemorrhoids cause the feeling. All & sundry say she mustn't stay so long, get on, try, then get off. Otherwise she will develop "bed" sores. Even after 1/2 an hour, her bottom area is pink from sitting on the loo; someone suggested a special padded cushion. On Wednesday last, between 0700 and 2200, I noted 10 transfers, ranging from bed - commode, commode - loo, wheel chair - loo, which on that day did not include transfers wheel chair - recliner or wheel chair - car. I attempt to use the plastic slider as much as possible.
After bringing her home from respite yesterday the in-use DuoDopa pump failed to detect a new cassette (we change cassettes late each afternoon) and beeped continuously until I removed the batteries . All the same, she is now using the spare pump. Undecided whether to return the suspect pump, nothing may be found wrong, for now it seems to be operational again.
On Monday I took her to see the Practice Nurse J. at our GP's. J. was unable to inspect what I thought to be the beginnings of a bed sore because there was nowhere for her to lay down for the area to be inspected, so a referral to a Community Health nurse was arranged. Meanwhile I was to keep the area protected and dry (no Calmoseptine!) but when Community Nurse E. arrived on Wednesday the area was almost without blemish, no broken skin and to leave it uncovered. It was pointed out that he gauze I had over the area had bunched, therefore likely to cause further problems.
The reduction in pump flow rate from 6.6 to 6.4 mL/hr seemed to improve her condition early in the week, measured objectively by how much she kicked and the ease of handling her on and off the loo. Yesterday Wild Dog called me to collect her from Respite; her dyskinetic kickings had begun around 2PM and were too much for her to tolerate by 3PM. So this morning I reduced the flow rate further, from 6.4 to 6.2 mL/hr after re-reading instructions provided by West Beer suggesting the normal (whatever the hell normal may be) flow rate is between 2 and 6. Reminds me of our bitter experience gained at the specialised clinic down in Batman City when she suffered very bad panic attacks following discharge due to the quantity of anti-Parkinson meds given; then a local specialist seriously advised reducing the quantity, thus restoring her to an almost normal condition. As I must have said before, it's one thing to prescribe medications during hospital stays, or at brief clinic or consulting room check-ups but such situations are abnormal; experts should view patients over a 24 hour period in a typical environment, at home that is. We see her neurologist, Dr F., next week at 3PM, about the time her legs kick steadily if not violently. Unless I reduce the flow rate to an amount to eliminate dyskinesias.
No progress with a lifting device. The daily care supervisor from Wild Dog, involved by the OT, has been away for a week. I think the idea was for Wild Dog to loan or hire a lifter to us for trial.
Nurses, physios, OT's are all being told she sits on the loo for extended periods attempting to poop. She has the feeling that "something is there", about to come. I need to rouse on her to return her to her wheel chair. One day I simply left her alone; she remained en-throned for 3 hours. I tell her her mild haemorrhoids cause the feeling. All & sundry say she mustn't stay so long, get on, try, then get off. Otherwise she will develop "bed" sores. Even after 1/2 an hour, her bottom area is pink from sitting on the loo; someone suggested a special padded cushion. On Wednesday last, between 0700 and 2200, I noted 10 transfers, ranging from bed - commode, commode - loo, wheel chair - loo, which on that day did not include transfers wheel chair - recliner or wheel chair - car. I attempt to use the plastic slider as much as possible.
After bringing her home from respite yesterday the in-use DuoDopa pump failed to detect a new cassette (we change cassettes late each afternoon) and beeped continuously until I removed the batteries . All the same, she is now using the spare pump. Undecided whether to return the suspect pump, nothing may be found wrong, for now it seems to be operational again.
posted by Kilpike | 10:28 am
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