BY LYNSIE MAY
THE BIRTH OF A COMPLEX CASE ALERT
In 2005, my doctors decided that I should have a colonoscopy. Usually this is a fairly simple procedure that is performed in an outpatient setting, but I’m a little more complex than the typical patient. I have congenital dysautonomia: a disease that affects all body systems—blood, lung, heart, digestive, kidney, and bladder. The abnormal ways this disease affects my body is reminiscent of how an orchestra would function without a conductor: my nerve function is totally incapable of synchronization. If my body had a note for every nerve impulse that was sent out, the sound resonating from it would be broken and disjointed.
For these reasons, any procedure that uses anesthesia is not a simple one. I believe that this is because I can no longer help regulate the autonomic function of my body by focusing on what my body needs to do. Under anesthesia, the mad conductor within me can take my body over completely, totally unopposed. Medications are then the only measure that can be employed to try and bring its harmony back into balance. Because of these risks, my doctors and I wanted to take every precaution.
I remember sitting in my general practicer’s office while she explained that, to be safe, I would have the colonoscopy in the hospital’s surgery center instead of the outpatient clinic. Then I would be transferred to either a critical care unit or telemetry unit––a place where my heart could be monitored for 24 hours. She also put a note to put in my record, which stated the name of my disease and the numbers to call if I had complications. I even consulted spiritual gurus and all my medical specialists to make sure they all agreed on my having the procedure, and I asked for any advice they had on getting through it. Although my guru’s consulted spirits and my doctors consulted colleagues, they came to the same conclusion: it would be challenging, but I could get through it. I figured I covered all my bases; I was ready.
The day of my procedure, I waited in the pre-op room.The anesthesiologist came in apologizing for not calling the day before. He explained that he had the wrong number. I found this odd, as I confirmed all my information with the hospital a couple days before. He then attempted to rush me through my history, but I carefully resisted his efforts. Maybe he felt I was too young to be so medically complex, but, regardless, I got the distinct feeling just thought I was just unnecessarily nervous. His air of confidence showed no tremble when I told him about the problems I had after anesthesia: the time I went into cardiac arrest, the time I had seizures, and how each time produced some sort of alteration in my consciousness due to my autonomic issues. I told him that my doctors recommended that my bladder should be catheterized, as bladder distention could trigger problems. He said he would have the nurse put in a foley (a tube that goes into the bladder and transports the urine into a bag outside one’s body) while I was under.
Before leaving, he informed me that he decided to do a different anesthesia. I decided to trust his judgement, as long as he consulted my doctor about his decision by phone. I gave him my doctor’s number and he left. A week or so after my procedure, I found out from my doctor that the anesthesiologist never called him. A little later, a nurse injected the first medication; my family suddenly grew smaller as I was wheeled through steel doors.
In the recovery room, I found I could not move or talk, but my senses were intact. I heard the recovery nurses talking amongst each other. There was concern in their voices, as they spoke about how I was not waking up properly. I tried to move my mouth to tell them I was awake, but it didn’t work. My mind was being held captive by my body. One nurse decided to call the anesthesiologist. I was relieved that someone was going to finally do something; they would call the anesthesiologist, and he would then tell them about my complications; I would get help.
To my surprise, I did not get help; instead, the anesthesiologist assured the nurse that I was having a normal reaction to the amount of medication he had given me. I know this because I heard my nurse talking about the conversation she had with him. She complained that what the doctor told her did not make sense, as she had seen other patients on twice the amount of medication that was given to me, and they hadn’t had a reaction like mine.
I refused to let this dash my hopes. The nurse would soon look at my chart, and there find my doctor’s note with the name of my disease. Eventually, I heard her rummaging through papers and heard her tell another nurse, “Well here it says congenital d-y-s-a-u-t-o-n-o-m-i-a. I have no idea what that means.” I knew from her tone she was weighing the effort to investigate this term against her limited time and energy. When no other nurse offered a definition or prompt to investigate, she disregarded it. I then prayed the nurses would ask my family about my medical conditions, as my last strain of hope.
A short time later, I heard a nurse state that my family was inquiring about my status. She said my boyfriend was getting upset that my procedure had been over for at least a couple hours now, and they still had not heard anything. I started to get my hopes up, but then I heard my nurse telling her to stall my family by reporting that I’m still waking-up.
“Why don’t you ask them? Please call my doctor!” I tried to scream. I heard a nurse comment that it looked like I was trying to say something. They asked me to try to speak again, but I couldn’t make the words audible enough for them to understand. More time passed and my nurse’s voice took on a frantic tone when I started to have a few muscle twitches that were the result of my trying to move and having a little bit of success.
Another nurse asked mine, “Did you call the anesthesiologist again?”
I heard her answer “I tried, but he is in doing another procedure.”
The other nurse suggested she call another one. A few minutes later, I heard an unfamiliar male voice trying to rouse me, and then he stated that the medicine my anesthesiologist was giving me to wake up could be interfering with my seizure medications and to stop giving it. Fast footsteps started coming towards me. I heard my anesthesiologist’s voice demanding that my nurse give me more of the medication, and assuring her that everything was fine. I heard the other anesthesiologist ask sarcastically “Are you sure about that?”
I then wondered why no one was enacting the plan of having me moved to a critical care unit? A little later, I heard nurses commenting that I looked distressed and “as if I was trying to open my eyes,”
I heard my nurse reply “Well I would like to call the anesthesiologist again, and get a neurologist in the picture, but the last time I called a doctor about her I got chewed out, so I’m hesitant.”
“What did the last one say?” The other voice replied.
“He told me that a colonoscopy is not a surgery that patients should have in a hospital setting, so why was I bothering him with a case that should not be here? I told him, I don’t know, maybe because she has reactions like this.” I thought finally someone is putting the pieces of this picture together!
Another nurse came close by and announced that my family was now getting upset that they had still not been given any report. My nurse retorted “I’ll go talk to them.” After she came back, I heard her say something about my boyfriend being upset that my family was being kept in the dark. A little while later, she reported to another nurse that she called the anesthesiologist again, and he finally agreed to let a neurologist be consulted.
During this time-period, I had became incontinent; I was soaked in urine from my upper chest down to my bottom. I then gathered that a foley had not been placed as promised. Later, I was told the amount of urine in my bladder probably triggered the severe autonomic response and sent me into the crisis. This would make sense because after I became incontinent, I gained a little more control over my movements. I had just gotten a new nurse. I know this because I heard my nurse telling the new nurse about my case, and how hard it was for her to leave me in this condition, but that she was already almost an hour past her shift’s end. I also heard her say that one of the nurses who saw me before my surgery said I seemed really sweet, while I was awake. I was stunned that this was the piece of information that got passed along.
I didn’t notice a new gait enter my room, but I heard a new voice, and gathered that it must belong to the neurologist. About ten minutes after he ordered an EEG, I heard my new nurse’s voice say, “A Dr. Garrett is on the phone for you.” I was so thankful to hear these words, as it meant my family must have alerted the doctor that knew me best.
I heard the neurologist answer, “I did not page a Dr. Garret.”
“I know, but he wants to talk to you.” The new nurse retorted.
I heard his footsteps move away from me. As he was leaving the room, I heard another set of footsteps pushing something on creaky wheels. It reminded me of when I was in the hospital as a child: for weeks I awoke to the sound of a woman pushing her squeaky cart full of the blood she drew, and, upon hearing her wheels, I would put out my arm to help speed the vampire along. This person’s cart sounded just the same as that one. Hands started to brush something cold against my scalp. I knew then that the cart must belong to an EEG technician who was getting my scalp ready to put electrodes on my head. They were on less than a minute when I heard a female voice whisper to my new nurse, “She’s faking it.”
“Really,” the nurse answered in a shocked voice.
“Yes,” she answered. “Her brainwaves say she’s alert. She just needs an audience.”
I was furious and fought to say something, but again the words did not form correctly. I noticed that I could no longer feel the nurses as close to me, as their breath was no longer upon my skin. The voices that were previously close were now further away. I could only hear the sound of whispering. Out of pure rage that left me unable to think clearly, I tried to sit up and pull my oxygen tubing out. I think I thought I would storm out, but quickly realized I could still not move much. The best I could do was lift my head up slightly up and make a nonsensical noise. The EEG technician put her hand over my mouth and slammed my face down telling me not to move and lie still. The slam may have been harder than she intended, as I was very weak, and lifting my head had felt like the equivalent to breaking out of metal bonds. I heard another nurse saying that my mom wanted to see me, and I tried to form the words “get my mom,” but couldn’t manage to make it understood. The EEG tech told the nurse “I don’t want anyone in here until this test is completed.” As a patient who has had many EEG’s that were positive for seizure activity, I marveled at the gull she had to not just read an EEG, a task neurologists alone had the authority to do, but proclaim I was faking my state of alertness before the test was even done.
I then tried to mumble, “You don’t understand.”
A nurse replied to my groans “What? I can’t understand you.”
Then I heard another nurse’s rushed footsteps coming towards my bed. Her voice come close as she stated, “The neurologist wants her admitted ASAP.”
I heard the EEG technician say, “Exactly, there is a place for people like her, but not here.” I then heard the sound of her feet pushing her EEG cart away.A minute or so after this, I heard my neurologist asking the nurse in a demanding tone why they insisted on standing around when he needed them to get me transferred to a critical care unit. I then heard several footsteps starting to move outside my room. I figured they went to call the ICU unit to find what beds were available.
Next, I felt Dr. Garret’s soft energy that I immediately recognized as his when he touched my arm in his caring manner. At this point, tears ran down my face, and I was able to make my hand wrap tightly around his. I wanted him to know I was still there, trapped inside myself. He just sat there with me, holding my hand, guarding me now. I finally gained enough control to manage to form the words “they were mean,” but this was a feat of extreme concentration and focus, and could not say any more. He stayed with me until I felt my mom’s energy in the room. I was sure it was her when she touched me. I just held her hand, and she wiped the tears that my body finally managed to produce. She did not know what upset me because it was too much of a struggle to make my mouth work again.
Dr. Garrett had given instructions on what to do to help support my transition out of being held captive by my body when he talked to the neurologist. Since this time, I was quickly making gains, and my ability to communicate got easier. With a lot of focus, I could now open my eyes for brief periods of time. I started to form words correctly. It was not easy, but I could do it; however, I still could not move much. As the nurse got me ready to be transferred, I told her that I heard what the EEG tech said. The nurse looked surprised. She mumbled “You did not hear anything.” I wondered why she would try to act like I was unconscious when the EEG had confirmed I was alert; after-all, wasn’t that why they assumed I was crazy? Now that I wasn’t crazy, she wanted to just pretend I was completely unconscious the whole time.
When I was rolled into the intensive care unit, a sweet voice started to tell me that they were going to put cardiac leads on my chest to monitor my heart. I opened my eyes long enough to see big, curly hair that puffed out against a soft face. As she pulled my sheets down she saw that my bedding and I were soaked with urine. I heard her voice, with an angry tone now, say to another nurse that she would need help lifting me to clean me up, as the surgery nurses had left me in my own urine. She expressed concern to the other nurse that having me left to lay in my own urine for so long would break my skin down, and how she needed a folley in me immediately. They were gentle, and spoke to me like I could hear them, even when it got to be too much effort to keep my eyes open. At this point, I thought the worst was over, I was being taken care of now, and would spend time in the critical care unit while I recovered fully.
Unfortunately, the worst was just beginning. Although I gained my ability to talk and move relatively quickly, my internal function did not come back as fast. My lung collapsed the next day, and I could not breath on my own. My day of observation turned into a month of being in a critical care unit fighting to regain control over my body. It was in this fight that I vowed that the medical miscommunication I witnessed was unacceptable for patients. I promised myself that if I survived, I would do something about this.