I am quite sure doctors spoke to me earlier in my hospitalization, but the first interactions I can actually remember were not until the sixth day. A young doctor woke me up. “Good morning Diana!” Based on her voice I thought she may have been the resident who was part of the team that put in my tracheostomy. I tried not to jump to that conclusion recalling how that resident had said she would prefer not to “make it” if she were me. She was about my height – five foot three – and about twenty years younger than me. Her dark brown hair was efficiently pulled back in a pony tail. She moved quickly and confidently and looked at me directly.
“My name is Dr. Meredith Papandrea. How are you feeling this morning?”
I wanted to say, “I’m not” as in “I’m not feeling.” Instead I mouthed the generic “Fine”.
“Are you having any pain?”
I did one long blink for “No”, even though this was not entirely accurate. If I could have spoken out loud I may have explained that I still had pain in the back of my throat and irritation in my nose that I knew was likely due to the NG tube. Plus the parts of my neck I could feel were sore and throbbing dully. But there were no new pains or pains for which I wanted to take medication or do anything.
“Any nausea or vomiting?”
One long blink. Did I even have enough muscles to vomit? I knew I felt nauseated before the last code, but that was days ago, so that did not count.
“Fever or chills?”
One long blink. I wanted to say I was a bit cold, but how could I have chills? With almost my whole body paralyzed, I could not shiver.
“Palpitations?”
One long blink. How would I know? Could I still feel my heart jumping in my chest? Maybe I would learn to feel my heartbeat some other way?
“Lightheadedness?”
One long blink. In addition to feeling lightheaded before the code, I felt lightheaded whenever I was moved, always temporarily, into a position with my head up more than a foot or two above the rest of my body. I assumed that was not what she meant.
“Shortness of breath?”
One long blink. How would I know? My breath was supplied by machine, the same number of breaths, the same volume of air every minute. The monitors and blood tests must be saying it was sufficient. I could not feel if the breaths were shallow or deep. I could not feel air going in and out of my nose as all the air was moving through the hole in my neck. I could not move to exert myself and get short of breath.
And on she went, asking questions for which I faked an answer. I could not feel most of my body. I could not move myself to see most of my body. And I had been sleeping or sedated most of the time for days. How could she expect informed answers from me? I guessed she had to ask these questions for billing purposes, and that she asked these questions on autopilot. I doubted she imagined the mental gymnastics going on inside of my head.
Why had I felt compelled to feed her meaningless answers as quickly and easily as possible? Was I afraid to admit that I did not know my new body yet? I vowed that I would learn to know my body again as well as I possibly could given my current limitations. I knew I would have to learn to read new signals, new sensations, new clues.
After the chain of questions came the physical exam which eventually included another series of long single blinks from me. First she shone a light in my eyes and mouth. Then she listened to my heart, lungs, and abdomen – just from the front with me lying on my back. She pushed and peeked at various things on my body that I could not quite see. She concluded with the neurological exam. First she brushed my cheek with a cotton swab on both sides of my face.
“Can you feel this?” Two quick blinks. “Can you feel this?” Two quick blinks.
Then she touched my earlobes – two quick blinks for each side. She touched the back of my head on both sides – two quick blinks for each side.
Then she touched me on each side of my tracheostomy. One long blink for “No” for each side. And so it went for the rest of my body. Shoulders – no. Upper lateral arms – no. Lower lateral arms – no. Thumbs – no. Middle fingers – no. Pinkies – no. “Can you feel this? Can you feel this? Can you feel this?” She went faster and faster through all the dermatomes. I could not follow her cotton swab with my eyes everywhere she touched. I concentrated on trying to feel something when she spoke and then doing one long blink immediately thereafter. We kept up a good rhythm. A rhythm I would have broken if I had felt anything, but I did not. Then she went back to the dermatome where I felt something – C2 which is the back of my head and my earlobes. Here she brought out a dull needle and alternated with the swab and the sharp tool to confirm that I could distinguish between light touch and pin prick. So I had normal sensation at the C2 level and nothing below.
After the sensation exam was complete the motor exam commenced.
“OK Diana. I’m not really going to test your neck muscles since your neck is immobilized in the collar and you just had cervical spine surgery, but you will do a lot of work on your neck muscles in rehab.” Rehab – I savored the word in my mind and briefly imagined myself without the cervical collar, struggling to regain the ability to hold my head up on my own, with the assistance of a patient physical therapist. The thought of learning to use my new body to its full, though limited, potential sent a warm tingle through the small part of my body I could still feel.
“I’m going to start testing at your shoulders and go down. I want you to try your hardest to follow my instructions. Even if we don’t see any movement, I might be able to feel it, so try your hardest.”
“Shrug your shoulders. Harder, harder, OK.” Her hands seemed to be on my shoulders although I could not feel or see them. Then she took my right arm.
“Bend your right arm at the elbow. OK try that again. Bend your right arm at the elbow.” She held my arm up at odd angles to allow me to bend my arms without gravity getting in the way. She had her hands on my muscles, feeling for any hint of movement.
“Straighten your right arm. OK, again. Straighten your right arm.”
Then the left side. Then back to the right side. Then all the way down my body until she got to my toes. I could not see everything I tried to do, but the elements I could see showed no obvious movement on my part. Perhaps she could feel some?
Finally she took out a reflex hammer and quickly performed a perfunctory examination of my upper and lower extremity reflexes. Again, I could not see everything, but what I could see showed no reflexes, until she got to my feet. This was not surprising since I had only been injured for nearly a week and was still experiencing some spinal shock. She spent more time with my feet and ankles, and I think I saw some movement in my feet and toes.
“Could you feel any voluntary movement?” I mouthed when she was done.
She had me repeat my question and then she answered bluntly, “No.”
“Have there been any changes?”
“Well, some of your reflexes are starting to come back. Based on the nursing charting you’ve gotten some of the sacral ones back like anal wink. You also have a DPR – delayed plantar reflex.” That was why she had paid such close attention to my feet. “You should start getting back the normal DTR’s soon. Unfortunately, your exam for voluntary movement and sensation has been very stable. Of course this is the most alert you’ve been for any exam we’ve been able to document. You were falling asleep during your other exams.”
“This is the first exam I can remember,” I mouthed.
“I’m not surprised.” She softened a little and veered off script. “I understand you’re an internal medicine doc. After that code the other day Cara told me you diagnosed yourself as a C2 quadriplegic before Cara even told you. Is that true?”
“Yes,” I mouthed and gave two quick blinks.
She paused, opened her mouth as if about to ask a question, and stopped herself. She went back into efficient mode.
“I’ll be back with the team for rounds in a couple hours. I’ve spared you the medical students on the team. Maybe I’ll give you one when you’ve got a bit more energy and you’re talking. Any issues you want the team to discuss on rounds?”
“I want to talk – when can I start?” I mouthed.
“You want to talk?”
Two quick blinks.
“I want to eat or I want a PEG tube if it’s indicated. I don’t want the NG tube.” I mouthed. She had me repeat myself.
“You want to eat and you don’t want the NG tube and you’re OK with a PEG tube instead if you need it?”
Two quick blinks.
“Sounds like you need speech consult for swallow eval and for talking with the trach.” She turned and walked out, looking over her shoulder as she went, “Bye for now.”
“I have more questions!” I mouthed, but she was gone.
<< ◊ >>
After my eyes followed Dr. Papandrea out, I took a good look around the room. All my attention had been focused on the young doctor and trying to feel and move as commanded. I had not noticed Andrew lying awake on the recliner. I wondered how long he had been awake and whether he had watched and listened to my visit with the doctor. He got up from the recliner and moved towards me as soon as our eyes met.
Without a word he put one hand on each side of my face, gave it a gentle squeeze and lowered his lips onto mine for a quick kiss.
“Good morning Diana.”
“Good morning,” I mouthed. “Did you sleep OK?”
“I guess so. Not as good as at home. Daniel and your mom stayed the night before last, so I had a chance to sleep at home. I slept for fourteen hours straight!”
I smiled whole-heartedly. “I’m happy you got some sleep. This must be really hard on you.”
Andrew was quiet. I guess he did not want to acknowledge that all of this was very hard on him. He grimaced and asked, “When are they going to talk to us? When will the doctors talk to you? There are so many people coming and going out of your room, but they don’t tell us much.”
Usually in a family medical crisis I, as the only physician in the family, was the go to person to get the information from the professionals and share it with the rest of the family. Without me in that role I could see Andrew was a bit lost. This was not surprising given the complexity of our situation and the forces bearing down on the health care team which all worked against constant, timely family communication. I remembered being a busy resident and hoping to find the patient alone, even if they could not speak much. Facing a concerned family member full of questions without easy answers and full of information I would need to document cost me time I did not have. Eventually communication would happen, but better to avoid it when possible in favor of efficiency. Even as I felt myself slipping into the familiar role of apologist for the healthcare system, I had to admit it stung to be at the receiving end of these mixed-up priorities.
“Yes, it’s so frustrating,” I mouthed. I smiled inside thinking the frustrating thing for me was not the paralysis, not being on a ventilator, not being dependent on others for all of my personal care – no, the frustrating thing was the lack of communication.
“I can’t take seeing you suffer like this. I need to know, when is this going to end? What can we expect? When will you be better? When will you talk? When will you walk? When will you move your arms?”
I answered my husband’s questions in my head:
When will it end? – Never.
What to expect? – C2 quadriplegia and likely ventilator dependence.
When better? – It depends on what you mean by “better”.
When talk? – Hopefully soon.
When walk? – Never.
When move my arms? – Never.
I asked myself, Should I tell him I was not suffering? Should I let him know that I knew the answers to his questions? Did I really know the answers to his questions? The medical truth was I did not. I needed more information and more time to be sure. With spinal cord injury there is always room for hope and surprises. My body’s truth was the deafening silence from below my neck telling me that I had arrived. I was finally the me I was always meant to be.
I planned to tell him that I was not suffering. Instead I mouthed, “I will get better.” I knew “better” for Andrew meant more than talking, swallowing, maybe holding up and turning my head, maybe even breathing without the ventilator. “I will get better,” I mouthed again. More than the truth, Andrew needed hope and needed to know that I had hope. “I will get better,” I mouthed a third time, my eyes locked on to Andrew’s deep, wet, brown eyes. My eyes filled with tears – tears because I was lying, tears because I hoped I was lying.
“You will get better. I know you. I know you will get better.” Andrew smiled through his tears, squeezed my face harder than he had earlier that morning, and kissed me deeper and longer.
<< ◊ >>
I had given Andrew a bit of hope, but we still needed information. I had a plan to get more information, and, as usual, I needed help, Andrew’s help.
I had to repeat this next bit of conversation several times and in several versions before Andrew got the gist of it by reading my lips. “I might be talking soon. I want to have a good meeting with the main doctor, the attending neurosurgeon, as soon as I can talk. And I want to hear rounds today and every day. Make sure I’m awake for that!”
Yes, even though I wanted to have a meeting with the attending neurosurgeon as soon as possible, it would be unlikely to satisfy my many questions if I was still unable to speak. I could make better use of an official family meeting with the doctors and team if my voice could be heard. Until then, I could get information from rounds, and, when I had more energy, reading my chart. During rounds all the neurosurgeons in charge of my care, possibly along with medical students, would see me and review my case as a whole team. The neurosurgeons would include the attending (the boss and professor), one or more residents (doctors getting on the job training in their specialty), and possibly one or more interns (first year residents). Normally during rounds Dr. Papandrea, the neurosurgery resident who had examined me earlier, would present how I had done in the past 24 hours along with all the new information available during that time to the team. Then the attending and team would enter my room. The attending would have a brief chat with me and perhaps show the team something interesting on my physical examination. He might even allow me to ask a question. Then the team would leave, discuss my case, maybe make a few learning points, and determine my plan for the day. Because I was requesting to listen in on rounds I hoped they would come into my room earlier and leave later than customary, allowing me to listen to the resident’s presentation at the beginning and the discussion at the end.
Now that Andrew had some hope and had a task – making it clear I wanted to listen in on rounds and making sure I was awake for rounds – he was temporarily satisfied. I let myself fall asleep.
Axel Dreams 