A Walk Through Thoracic Park

This last Thursday I spent the day completing my quadriplegia son's care needs. Friday I spent screaming at the nearby hospital. Saturday I was home again catching up on my son's care.

I am a caregiver. This is my life. If you care for someone you love, you understand.

The screams didn't last all day Friday, just when I tried to get off the MRI table after the imaging on my spine was complete. My muscles froze into one solid spasm. I couldn't move, and it felt like my back was being broken into two pieces. A series of primal screams escaped from me that felt like my soul had leaked out. I was finally able to make it to a wheelchair, where I was taken down to ER.

The two MRI techs who helped me are probably in counseling today. One of them kept mumbling to me, "I'm so sorry. I'm so sorry."

After hours in the waiting room, hunched over in a wheelchair, dressed in hospital scrubs, and clutching my belongings, I was finally taken back to an exam room. There I found some relief and answers to my pain. I also had time to think about the experience. What did they do right at that hospital? And what, if anything, could they have done to help me?

What they got right.

1. I had had to cancel my original appointment in radiology due to snowy weather and bad roads. The roads had cleared up, so I drove on up and appealed to them to work me in. They not only got me in, they did it so quickly I barely had time to pay for the new purse I found at the gift shop. It takes a lot of pain to keep me out of a gift shop.

2. They had two baskets of pens at the check-in. One was labeled "Clean," and one was labeled "Dirty." As a nurse who is OCD about infection control, I was very impressed by this kind of dedication to cleanliness.

3. The room (when I finally got to one) smelled and felt clean. The privacy curtain looked new. Everything appeared well-organized.

4. The health providers took time to listen to my concerns and took my perspective into account when writing orders.

How they could improve.

1. Training personnel on how to assist patients with mobility problems. I had warned them about my intense back spasms and doubts about being to get off the table. They quickly assured me they would take care of helping me back up. But in the midst of the spasms, I had to instruct the tech on how to press and massage the back muscle to release the spasm. It was the only way I got on my feet long enough to make it to a wheelchair. 

2. Listening first before making an assumption about a patient's needs. After setting me in the waiting room to tough out the pain, they came and got me once. I thought I was going to a room, but they wheeled me down to have a CT. When I told the tech I couldn't get down flat again then, she mistook my hesitation for fear of the test and proceeded to instruct me on how it wouldn't take long and wasn't scary. I responded a bit testily that I was a nurse, had no problems with getting a CT (I had just endured the MRI tube), and that my problem was getting off the table. I was returned to the waiting room.

3. Remembering that pain, though not a visible sign of disease or injury, is a significant symptom. As I sat in the waiting room, others came and went. I obviously don't know why they were there, but I have a lot more respect for those who arrive in an emergency department in pain. I understand the struggle those departments have with people who are on the hunt for pain killers. But I can't take narcotic pain killers. Two or three ibuprofen would have helped.

I finally got seen and am on the mend. Thank God I have still been able to care for my son through my own health saga. And I thank God for a loving family and faithful friends who have stepped in to pray for us and assist us on the rough days.

What are your stories as you walk through your own caregiving experience? Do you have ideas that could improve the quality and delivery of healthcare in your area? We'd love to hear them.