Monday, March 07, 2005

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.

8 Comments:

Blogger Beth Smith said...

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.

4:10 PM  
Blogger Dave & Nancy Estes Park said...

Jacqui, So sorry your experience was not more positive. We have had similar experiences with our hospitalizations, it sucks! Thank god you were there to at least get them to ease up a little, but yes they DO view it as a job that needs to be done, so they can sign on the little chart and cover their butts! It's infuriating. Yes, you would NEVER treat a dog this way and we know from vast experience with you and your collegues at CSU, always with the human and animal needs in mind. Hang in there we know the next week or so will be rough, but when the drugs start leaving her system she will get back to more normal. Know we love you,
Dave, Nancy and Zane too!

4:17 PM  
Blogger Carissa said...

I am so very, very sorry for everything that you are having to deal with, especially the nurse/staff reponse to Pam. Please know that it is your right to bring this matter to the nurse manager's attention or you can even lodge a complaint. I work for the Center for Patient & Professional Advocacy here at Vanderbilt. If you want I can speak with Jodi Gumucio, Director, Office of Patient Affairs regarding this matter. She would know who you would need to talk to. Or you can just deal with this as you see fit. I will not talk with Jodi unless you ask me to. My e-mail at work is carissa.ray@vanderbilt.edu. Just let me know.

It will get better. I promise. Pam has not come all this way for nothing.

Much love to everyone.

Carissa

4:22 PM  
Blogger Debora Shiflett said...

This comment has been removed by a blog administrator.

7:07 PM  
Blogger Debora Shiflett said...

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

7:13 PM  
Blogger John Bledsoe said...

Jacqui-

I sing in the VCC, and I've so enjoyed your updates on Pam. I particularly relate to your frustrations with the hopsital. I've spent a lot of time at VUMC on multiple occassions over the last few years with my partner as a patient, and ongoing disregard for the little things that are so necessary for healing can be very unnerving. I've learned that most of the staff just don't recognize so many of these little things, and open communication helps. Others have posted excellent suggestions here about dealing with these in the future. I'm sorry y'all have to deal with that on top of everything. Please know lots of folks are thinking and praying for y'all, and that includes prayers for the little things too, which so easily grow into bigger problems.

John Bledsoe

7:26 PM  
Blogger Jacqui said...

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...!]

9:13 PM  
Blogger Missy said...

I'm an RN who worked for 10 years at Vandy's Childrens' Hospital and was horrified to hear of your experiences with the staff. I've also been hospitalized at Vanderbilt, and found the culture on the adult floors quite different from that in the childrens' hospital. It IS possible for the staff to limit their interruptions - we did it in pediatrics all the time. These problems are NOT small pebbles in your shoes, they are large boulders - important issues that need to be addressed. I encourage you to go to the top with these issues, and try not to feel like you are just complaining about minor things. (You don't know me, but I'm a friend of Shirley (Fields) Goodell, who knew your mom at Scarritt, and I've been watching your mom's progress with a great deal of concern and lots of prayers.)

Missy Boling

2:58 PM  

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