Chapter 331 - Weariness
Calls on Monday from the OT wishing to book her in on Wednesday to the new Re-hab section of the local hospital. After some phone call ping-pong we agreed for her to do so on Tuesday about 10am. When that time came she was feeling very OFF, so rang the hospital to delay admission until around 11am, into a 2 bed room, although it's unlikely she will need to share with anyone. When we parked outside the hospital she was quite positive that the day was Saturday because the number of parked cars was less than usual; a similar comment was made later; each causing me concern.
As usual with PD meds, the staff locked them in a drawer and when I went in to the hospital day, Wednesday, at about 7.45 to demo the Apo pump, the ward sister figured out that apomorphine was a category S4 drug therefore had to locked in a safe, so that is where the ampules have remained ever since. That same nurse was intent on dispensing the PD meds and as she did so for 10am my PWP yelled "That's the wrong colour, it should be blue!) (no cognitive problems with this one!) after which the nurse decided that she can obviously cope with dispensing her own meds, so she has continued as at home, sorting the meds into labelled pill bottles, except that the drawer in the bedside table is sometimes locked, more often not. Down the street I bought two new money belt bags for the pump, the original one we bought was becoming a little tatty. Also, she needed some jubes to eat. I told friends bumped into in the supermarket where she was and later rang the neighbour at the rear.
I went to the hospital again around 8am on Thursday as a precaution in case the pump gave the nurse any bother. It had; she was unable to prime it, simply because she had not filled the syringe to 20ml, rather only to 15ml. I said to the nurse "More juice is needed to make it up to 20ml" so she scurried off to where ever she needed to do it; I felt concern because I was not specific about Apomine or saline, so when the nurse returned, I clarified that she would have used 4 ampules, and she agreed. The pump had been primed and only contained 22 hours worth of fluid. Damn, for that meant the next change would be due around 6am the following day. My PWP was showing concern about all this, saying that she was able to trust me. The nurse decided that if I didn't mind, why didn't I come in each morning and change the pump over myself. So I have done so, each morning giving the appropriate shift nurse a quick overview of the pump. Unfortunately other patients' needs tend to call them away, and this morning, Sunday, was the first time I was able to show a nurse taking down the pump and setting it up as well. And by today the pump has returned to our approximate 8am changeover without having to mess about wastefully with an extra filling, since an allowance of about 1/2 an hour for a shower moves the start time of the pump forwards. Each morning I take a pack of 5 ampules with me
The above problems illustrate the lie to the distributors of Apomine providing training to local hospital staff. Yes there was some sort of demonstration around the time we became involved with the stuff, but I suspect only to the palliative care nurses, one of which was assigned to us but he has now left the area. I hate to think of the issues that may arise should she go into the medical wards of the hospital. So there were a couple of boo-boos in Re-hab as described above but they are understanding enough to permit us to perform our own meds. And the nurses are each very interested in learning about the procedure.
On Thursday, she was given a "leave pass" for an appointment with Polly the PD Nurse in Hot Air City. Polly obtained permission for the Apomine to be increased by 1ml to 9ml plus 11ml of saline This change was implemented on Friday. While there, Polly arranged for a cognitive test for her; she gained a score of 96% so I am relieved, my fears are unfounded. The score reminds me of a character in "The Botswana #1 Ladies Detective Agency". Polly believes the LSVT BIG programme was too tiring for her, when I mentioned that she has been unable to cope with very little of the routines at home. On the return trip we called into home for her to gather some knitting etc but she was not up to looking for patterns and needles, so settled on a couple of incomplete carry bags needing some hand stitching. I am afraid she will become bored silly without some hand activities.
Each day since the Apomine was increased she has experienced dull headaches, frequently freezes, sometimes on the loo and requires the assistance of two nurses to extricate her. She has filled in a couple of my ON/OFF charts, not showing any improvement. Walking with her pushing her walker around the hospital corridors, I am able to detect when her left leg begins to fail; there is a distinct change in the sound of her footsteps.
Although I have not seen as much of her these last few days, I like to think perhaps there is less dyskinesia. She says her left foot continues to have a sideways pulling force upon it, as if a string is attached to the big toe. The Re-hab resident doctor was stern with her about calling for loo assistance 4 or 5 times each night. The OT and the Physio have told her not to concentrate on her feet (when dyskinetic) and the motion will cease; I wonder what they think is wrong with her.
As usual with PD meds, the staff locked them in a drawer and when I went in to the hospital day, Wednesday, at about 7.45 to demo the Apo pump, the ward sister figured out that apomorphine was a category S4 drug therefore had to locked in a safe, so that is where the ampules have remained ever since. That same nurse was intent on dispensing the PD meds and as she did so for 10am my PWP yelled "That's the wrong colour, it should be blue!) (no cognitive problems with this one!) after which the nurse decided that she can obviously cope with dispensing her own meds, so she has continued as at home, sorting the meds into labelled pill bottles, except that the drawer in the bedside table is sometimes locked, more often not. Down the street I bought two new money belt bags for the pump, the original one we bought was becoming a little tatty. Also, she needed some jubes to eat. I told friends bumped into in the supermarket where she was and later rang the neighbour at the rear.
I went to the hospital again around 8am on Thursday as a precaution in case the pump gave the nurse any bother. It had; she was unable to prime it, simply because she had not filled the syringe to 20ml, rather only to 15ml. I said to the nurse "More juice is needed to make it up to 20ml" so she scurried off to where ever she needed to do it; I felt concern because I was not specific about Apomine or saline, so when the nurse returned, I clarified that she would have used 4 ampules, and she agreed. The pump had been primed and only contained 22 hours worth of fluid. Damn, for that meant the next change would be due around 6am the following day. My PWP was showing concern about all this, saying that she was able to trust me. The nurse decided that if I didn't mind, why didn't I come in each morning and change the pump over myself. So I have done so, each morning giving the appropriate shift nurse a quick overview of the pump. Unfortunately other patients' needs tend to call them away, and this morning, Sunday, was the first time I was able to show a nurse taking down the pump and setting it up as well. And by today the pump has returned to our approximate 8am changeover without having to mess about wastefully with an extra filling, since an allowance of about 1/2 an hour for a shower moves the start time of the pump forwards. Each morning I take a pack of 5 ampules with me
The above problems illustrate the lie to the distributors of Apomine providing training to local hospital staff. Yes there was some sort of demonstration around the time we became involved with the stuff, but I suspect only to the palliative care nurses, one of which was assigned to us but he has now left the area. I hate to think of the issues that may arise should she go into the medical wards of the hospital. So there were a couple of boo-boos in Re-hab as described above but they are understanding enough to permit us to perform our own meds. And the nurses are each very interested in learning about the procedure.
On Thursday, she was given a "leave pass" for an appointment with Polly the PD Nurse in Hot Air City. Polly obtained permission for the Apomine to be increased by 1ml to 9ml plus 11ml of saline This change was implemented on Friday. While there, Polly arranged for a cognitive test for her; she gained a score of 96% so I am relieved, my fears are unfounded. The score reminds me of a character in "The Botswana #1 Ladies Detective Agency". Polly believes the LSVT BIG programme was too tiring for her, when I mentioned that she has been unable to cope with very little of the routines at home. On the return trip we called into home for her to gather some knitting etc but she was not up to looking for patterns and needles, so settled on a couple of incomplete carry bags needing some hand stitching. I am afraid she will become bored silly without some hand activities.
Each day since the Apomine was increased she has experienced dull headaches, frequently freezes, sometimes on the loo and requires the assistance of two nurses to extricate her. She has filled in a couple of my ON/OFF charts, not showing any improvement. Walking with her pushing her walker around the hospital corridors, I am able to detect when her left leg begins to fail; there is a distinct change in the sound of her footsteps.
Although I have not seen as much of her these last few days, I like to think perhaps there is less dyskinesia. She says her left foot continues to have a sideways pulling force upon it, as if a string is attached to the big toe. The Re-hab resident doctor was stern with her about calling for loo assistance 4 or 5 times each night. The OT and the Physio have told her not to concentrate on her feet (when dyskinetic) and the motion will cease; I wonder what they think is wrong with her.
posted by Kilpike | 8:16 pm
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