Part Eight: Your new “private” room now with surround sound!

Around 11 a.m., my mom visits me in the emergency department (ED). I am exhausted form a night of little sleep. She brings me food. I eat some soup, but I am not very hungry. We pass the time, watching the clock on the wall tick off the minutes.

A nurse enters my room. She informs us they are going to be moving me to another ED room, one which has more privacy. I think this is odd as I usually am not moved once situated in the ED. The hospital has rules regarding being on a home ventilator. One of which is I am supposed to be in a room which has continuous monitoring of my vitals to a screen at the nurses' station.

When I am moved, my new "room" is nothing more than a tiny peripheral ED cubicle enclosed by curtains. The vitals monitor in the make-shift room is NOT connected to any exterior monitor. If any of my vitals signal an alarm on my monitor, the machine only beeps in my room. With having only curtains as dividers between the rooms, the area is extremely noisy. Conversations from adjacent rooms compete over each to be heard, machine alarms in rooms are going off and then there is the noise of people being moved through the ED on gurneys going to and from the ED. With all the noise, there is no way anyone would be able to hear my vitals monitor alarming.

Moreover, I am extremely sensitive to noise. Add to the noise a night without sleep and being very sick, my body cannot handle the stress. In no time, my dystonia roars its head. My muscles begin to spasm and twitch. My heart rate, blood pressure and breathing rate begin climbing higher and higher. Soon, I am shaking uncontrollably and my vitals monitor is blaring away, signaling my vitals are out of the normal range. Nothing happens. I have no call button to signal for my nurse.

My mom is in my cubicle. She is not sure what to do. I have never had a significant dystonia attack in front of her. What I really need is to get to someplace quiet. Ativan, a sedative, will also calm down my muscle spasms, but I try to avoid Ativan at all costs since it has bad side effects. My mom opens the curtain to my ED cubicle. Nurses peer into my room as they pass by. No one stops to ask if I am ok or asks if I need help. My mom is able to find my nurse and explain I cannot tolerate loud noise. The nurse tells my mom the hospital is full. This is the only place for me. My mom is not happy. I continue to worsen.

I feel terrible for my mom. She has never seen me in such an awful state. When I have dystonia attacks, I know what I need to do: get into a dark, quiet room. Noise, light, smells and vibration all contribute to an overload on my nervous system. If I can eliminate as many stimuli as possible, my body can better recover from the information overload. If I cannot find relief from all these stressors, every sound, light bulb, rumbling of a bed passing through a hallway, etc., all cumulatively add to up to too much chaos. My body cannot filter out the over abundance of information and responds by sending too many signals via my nervous system to my muscles. Spasming, twitching and very painful muscle contractions occur throughout my body. If the attack becomes severe enough, my diaphragm muscles seize up, and despite having a ventilator to breathe, my lungs are not able to inhale/exhale.

 

 My mom tries and tries to get help form my nurse. My nurse, however, is uninterested in helping me. After what seems to be an eternity, my nurse arrives at my bedside with a small dose of Ativan. The medicine helps my symptoms a tiny bit, but it also brings side effects. Ativan causes me to have hallucinations, which cause me to become panicked. This new anxiety only provokes more muscle spasms and rapid heart rate. My mom leaves my curtain open and treks back to the hotel to get her noise cancelling headphones. I am still having a high heart rate, rapid breathing and muscle spasms, but no one seems to care.

My mom returns with her headphones. By this time, my body is too exhausted to continue to violently react. My symptoms start diminishing. Shortly thereafter, a medical team arrives in my ED cubicle. They said they will be my team of doctors when I get to the floor. I should be transferred to a room very soon. After the doctors leave, my mom departs for the hotel. I continue to wait in my ED cubicle for a room. Eight hours after I first arrived in my new "private" room, I am finally transferred to a room upstairs. Eight hours of constant stress on my body leaves me in an extremely tired, sick state. As much as I want to go to sleep, my nurse continues to bother me with questions and administering medicine. Around 10:30 p.m., I drift off to sleep for a few hours.


(Link to Part Nine, please click here)