Diary entry
Reflections from last night:
Today was filled with good news, jarring contrasts and disheartening revelations.
The good news is that Mom did great under anesthesia and the doctor achieved good alignment of the bone fragments. A large cartilagenous flap was discovered in surgery that increases the likelihood that Mom will eventually need a joint fusion but this is a relatively minor thing in the grand scheme of things. The doctor, Dr. Kregor, was wonderful and kind with Mom before the operation and with me after it. We are very delighted to have lucked into having him on our team.
Post-operatively, things have been much less 'fun.' 'Compared to what?' you might ask in imitation of Mom. 'Compared to almost anything she has had to experience,' I would answer. When we arrived to Mom's new room, she was incredibly agitated and fearful. In addition to having severe pain in her ankle, Mom was quite doysphoric and has remained so all night. She alternates between talking semi-coherently, yowling abruptly in pain, crying piteously and attempting to sleep. It was remarkably excruciating. This continually new kaleidoscope of technicolored pain and drama truly embues in me a new appreciation of the great price paid by unflinching artists, musicians, and writers in their search to capture the human condition.
Finally, having survived the night with Mom prior to surgery, the self-parodying experience of completing pre-surgical paperwork, and the first five hours of a long long night post-operatively, I was forced to an unpleasant realization.
First, though, a confession.
Over the last week, I have noticed a strange emotional change in my landscape. Rage has been sneaking in-burbling, gurgling and belching like a stream winding out of sight near a hiking trail. At first I wondered if it was that I needed more time alone, more sleep, more exercise, more support or more silliness. Next I questioned whether it was simply a matter of the long road exacting its toll. Each possibility I have carefully weighed and discarded as the source of the anger, though almost all of these are real issues that I balance daily, as I am sure do you.
But this last twenty-four hours leads me to posit the following:
There is a huge problem in the medical system when I can unequivocally say that I would not treat a dog the way that people in this leading medical institution treat my mother. Furthermore, I cannot honestly say that I know of a single peer, student or supervisor that would consider such discourteous behavior conducive to healing.
'To what grievous excesses do you refer?' I hear you cry.
Nothing grievous, nothing excessive. Worse somehow in the smallness of the problems.
Mom was woken while sleeping every 30 minutes for over 2 1/2 hours the night before her surgery (Visit 1: wake to take blood pressure and heart rate; Visit 2: give pills; Visit 3: wake to check pulse ox reading; Visit 4: wake to ask if needs to go to bathroom; Visit 5: wake her to tell me to get them should she need to go to the bathroom). Each visit involved turning on the overhead lights without warning and waking her even when they came to talk to me and I wasn't sleeping! By the time I finally convinced them to STOP bothering her, she could no longer go back to sleep. So we sat up in the mesh bed and talked about what was going to happen, and I tried to reassure her that it would be alright in the end. As she wailed to Dr. Kregor on the phone, 'I'm only a musician!' it was hard work trying to calm her. Finally she got back to sleep at about 1 am to sleep until 3ish. Then up again and frightened. Back to sleep about 4:15am but the nurse came in at 4:30 to tell me to let her know when we got up so she could ultrasound Mom's bladder. This was their behavior even after knowing that Mom had a prolonged orthopedic surgery the next day and needed rest!
The presurgical forms and night post-op were just more of the same. It wasn't till I was almost home (driving the back way) that I truly recognized what bothered me so. It was the fact that each individual saw my mother as a job attached to a case with a potential situation brewing in the wings. VERSUS seeing it as a treatment order for a woman who had suffered a catastrophic and life-changing accident with an impending surgery. Had any of them seen the latter, they would have taken a moment to see if there was a way to lump their orders to limit the amount of disturbance they created the night before surgery.
Today was filled with good news, jarring contrasts and disheartening revelations.
The good news is that Mom did great under anesthesia and the doctor achieved good alignment of the bone fragments. A large cartilagenous flap was discovered in surgery that increases the likelihood that Mom will eventually need a joint fusion but this is a relatively minor thing in the grand scheme of things. The doctor, Dr. Kregor, was wonderful and kind with Mom before the operation and with me after it. We are very delighted to have lucked into having him on our team.
Post-operatively, things have been much less 'fun.' 'Compared to what?' you might ask in imitation of Mom. 'Compared to almost anything she has had to experience,' I would answer. When we arrived to Mom's new room, she was incredibly agitated and fearful. In addition to having severe pain in her ankle, Mom was quite doysphoric and has remained so all night. She alternates between talking semi-coherently, yowling abruptly in pain, crying piteously and attempting to sleep. It was remarkably excruciating. This continually new kaleidoscope of technicolored pain and drama truly embues in me a new appreciation of the great price paid by unflinching artists, musicians, and writers in their search to capture the human condition.
Finally, having survived the night with Mom prior to surgery, the self-parodying experience of completing pre-surgical paperwork, and the first five hours of a long long night post-operatively, I was forced to an unpleasant realization.
First, though, a confession.
Over the last week, I have noticed a strange emotional change in my landscape. Rage has been sneaking in-burbling, gurgling and belching like a stream winding out of sight near a hiking trail. At first I wondered if it was that I needed more time alone, more sleep, more exercise, more support or more silliness. Next I questioned whether it was simply a matter of the long road exacting its toll. Each possibility I have carefully weighed and discarded as the source of the anger, though almost all of these are real issues that I balance daily, as I am sure do you.
But this last twenty-four hours leads me to posit the following:
There is a huge problem in the medical system when I can unequivocally say that I would not treat a dog the way that people in this leading medical institution treat my mother. Furthermore, I cannot honestly say that I know of a single peer, student or supervisor that would consider such discourteous behavior conducive to healing.
'To what grievous excesses do you refer?' I hear you cry.
Nothing grievous, nothing excessive. Worse somehow in the smallness of the problems.
Mom was woken while sleeping every 30 minutes for over 2 1/2 hours the night before her surgery (Visit 1: wake to take blood pressure and heart rate; Visit 2: give pills; Visit 3: wake to check pulse ox reading; Visit 4: wake to ask if needs to go to bathroom; Visit 5: wake her to tell me to get them should she need to go to the bathroom). Each visit involved turning on the overhead lights without warning and waking her even when they came to talk to me and I wasn't sleeping! By the time I finally convinced them to STOP bothering her, she could no longer go back to sleep. So we sat up in the mesh bed and talked about what was going to happen, and I tried to reassure her that it would be alright in the end. As she wailed to Dr. Kregor on the phone, 'I'm only a musician!' it was hard work trying to calm her. Finally she got back to sleep at about 1 am to sleep until 3ish. Then up again and frightened. Back to sleep about 4:15am but the nurse came in at 4:30 to tell me to let her know when we got up so she could ultrasound Mom's bladder. This was their behavior even after knowing that Mom had a prolonged orthopedic surgery the next day and needed rest!
The presurgical forms and night post-op were just more of the same. It wasn't till I was almost home (driving the back way) that I truly recognized what bothered me so. It was the fact that each individual saw my mother as a job attached to a case with a potential situation brewing in the wings. VERSUS seeing it as a treatment order for a woman who had suffered a catastrophic and life-changing accident with an impending surgery. Had any of them seen the latter, they would have taken a moment to see if there was a way to lump their orders to limit the amount of disturbance they created the night before surgery.
posted by Jacqui at 3:29 PM
4 Comments:
Jacqui...I've been where you are with my husband's hospitalizations and I can offer one suggestion. Keep track of all these things that are annoying, and when the steam of anger has left your system, write them all down logically and send them to the Vice Chancellor of the Hospital Harry Jacobson and the CEO, Norm Urmy. It's amazing how they responded to a simple suggestion and a problem I had at two different times.
The response to the suggestion was taken seriously and made things more comfortable to patients' families in the neuro ICU waiting area. The other issue was specific to a need I had and it was taken care of also.
I think you are right that the care givers simply don't know how it feels. Sometimes they need to be reminded. HUGS
By the way, there are probably more than me who have been through this road of intense hospitalization patient advocate role.....you DO need to know you are not alone. Feel free to call me to issue a call for any of us to come surround you one day for lunch.
This comment has been removed by a blog administrator.
Jacqui,
I, too, am extremely sorry for the difficulties that you are experiencing on top of the anguish that you feel for your mother and everything that she is going through. I would like to echo both Beth and Carissa's words and encourage you to send your thoughts and suggestions to Dr. Jacobson and Norman Urmy.
The medical center has just this year embarked on an initiative to try to discover these very types of issues and eliminate them from the system so that Vanderbilt's patients experience excellent care and service. All of the hospital administrators, including Dr. Jacobson, are deeply committed to improving patient care and service. Changing the way work is done is not always easy, but because of this initiative, the hospital leaders are in a much better position to respond to your comments and suggestions.
If I can help you at all with any of this, please let me know.
Debora
Thanks so very much for the bulwarks following my tired posting,..
Please be assured that I recognize these things as so many little pebbles in our shoes. It is just that when one hits the 27th doctor and the 111th nurse (if anything, an underestimate), it is hard to remain patient and informative. Suddenly it seems ridiculous that one has to inform or teach.
When I find myself retraining the 111th nurse, I suddenly wonder, why is this necessary? Were none of these people raised by living beings? It disheartens me to find myself asking how human medicine has come to this crossroads, been allowed to come to this crossroads... but on we trudge.
[Parenthetically, it reminds me of my attitude regarding college boyfriends- It was tedious to train them, but at least I knew every antecedent benefitted from the results...!]
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