This is a true story about two patients that I cared for when I worked in the epilepsy monitoring unit in the hospital. Only the names have been changed. The EMU is a highly specialized, closed unit, and has only 15 beds. Patients came for observation, treatment, and evaluation for surgery from all over the world. The average stay was between 5 and 7 days, sometimes much longer, depending on the success in locating where the seizure activity was taking place in their brain.
They both had the same name. There was Jeremy 1 and Jeremy 2. One was from an Amish family, and one was from a Mennonite family. Both had serious seizure disorders. They were admitted around the same time. It was the third admittance for Jeremy 1, the second for Jeremy 2. It was the first time I had cared for either one of them.
- Upon admittance, patients were tapered off their anticonvulsant medications in order to induce seizure activity. We also employed a variety of measures in order to trigger activity such as photic stimulation, involving strobe lights and patterns. We also used sleep deprivation. A number of highly specialized tests based on the individual patient’s case were then conducted. Since we were a small unit, I worked very closely with our neurologists and EEG technicians in administering the tests and evaluating the patients through continuous video and EEG monitoring.
There were many factors taken into consideration as to whether a patient was a good candidate for surgery, some were good candidates and some were not. Some came to the EMU multiple times because their seizure activity couldn’t be recorded during a previous stay. Some would return because their medication was no longer effective. And some who already had prior surgery had their seizures return again, and so returned for more evaluation. It was a long, complicated, painful journey to say the least.
Jeremy 1 had suffered from multiple, daily seizures since his childhood. He would experience them 20 to 30 times per day. Seizure activity in the brain varies widely in intensity. Some seizures are mild, while some are a lot more severe. Jeremy 1’s seizures were fairly mild, and when they occurred they were usually characterized by slight flutters in his eyes. But since they occurred so frequently, they seriously interfered with his life. His family owned a veal calf farm and he helped on the farm whenever he could. He was in his early 20s, strikingly handsome, talkative, and very polite. He had been homeschooled and didn’t have a driver’s license. He had spent the majority of his life with his parents.
Jeremy 2 also lived on a farm. His family raised corn and soybean crops. He also worked and helped on the farm as he was able. His seizures were more severe and disabling. He suffered with 2 to 3 per day, but they were of a much higher intensity accompanied by strong physical symptoms. Jeremy 2 was also in his early 20s and a handsome young man as well. He was very tall, stoic, and gentle, but also very sad.
Both of the families of these two patients were extremely involved in their lives, especially their mothers. I will never forget these two extraordinary women and how much they loved their sons.
Nursing is a very emotional profession at times, but you must be careful to keep your emotions in check. You must try your best to separate them from the care you provide, especially if it’s more critical in nature, so you can effectively concentrate at all times on your patient’s changing conditions. But as any nurse will tell you, we are human, and sometimes there are patients who have more of an effect on us than others, including their families.
On the day when I met Jeremy 1 for the first time, I entered his room and immediately was greeted by his parents with big smiles and warm handshakes. I approached Jeremy who was lying on the bed, watching a baseball game. It was very important that our patients stayed in bed as much as possible since they were taken off their meds. If they were out of bed during the onset of a seizure, it posed great risk to their safety, so we used bed alarms to alert us if they got out of bed unattended. Someone had to accompany them at all times if they wanted to go for a walk in the hall, as well as be by their side every time they used the bathroom.
I leaned against the padded rail on the bed and immediately noticed how handsome he really was. I think he was aware of it, too. The other nurses had joked about it in report. He had been here a couple of times before.
He glanced at me, taking his eyes off the television, and then really noticed me and started kind of looking me over. I could tell. His dad then said, “You’ve got a pretty one here, Jeremy, you better be good to her.” I could see he was a little embarrassed by that remark, so I brushed it off quickly and told them I would be right back to get his IV started. His mother followed me out of the room into the hallway.
She got very close to me and took my hands in hers. She told me she wanted me to know just how much she appreciated the work I did as a nurse. She said how they had been through so much, and that Jeremy was feeling really down about this latest setback. His meds weren’t working anymore, and he needed an adjustment if not additional medications. She told me she could tell that I would take good care of him and gave me a big hug.
The techs were coming down the hall to get his scalp electrodes in place, which took a while, so I had to cut her off to go get the supplies to get his IV going. Our patients required immediate placement of rescue IVs in case we needed to administer medication for prolonged or cluster seizures. Anything could happen during a seizure – some of the most common occurrences we dealt with were aspiration, increased secretions which required immediate suctioning, aggression, and patient injuries. At times, it would take two or three people to restrain a person during a violent seizure so they didn’t get hurt. And as soon as the seizure started it was critical to time its duration. During a particularly bad instance of aggression, I had one patient throw all of the food on her tray at me, lobbing rolls like baseballs, and then she took the tray and threw it at me like a Frisbee. You had to be prepared for anything.
The first time I met Jeremy 2, I entered his room and saw his mother sitting by his side. She was dressed in traditional Amish clothing and quickly stood up to meet me. She was very polite and soft-spoken. Jeremy 2 was asleep in bed. He had been through surgery to have “depth” electrodes placed deeper in his brain in order to find the location of his new seizures. I told his mother I would return shortly to do an assessment.
I was in the middle of gathering supplies when I heard a bed alarm go off. It was coming from Jeremy 1’s room. I ran to the room and sure enough, there he was out of bed heading for the bathroom. His mom and dad had left to go get something to eat, so he was alone in his room. I told him once again how important it was to hit his call button when he had to use the bathroom and that someone would come to help him right away.
When patients had scalp or depth electrodes, there were many cords that plugged into equipment in the room. All of the cords had to be unplugged and then carefully held to the side so the patient could move around. Even when they sat on the toilet, someone had to hold the cords for them, in addition to being right by their side in case a seizure started. He said he just hated being a bother.
I went back then to Jeremy 2’s room. He was awake and I introduced myself. I could tell he wasn’t feeling good and seemed sad. I reassured him that I was there for him if he needed to talk as well. His mom liked that and encouraged him to talk to me. After I was finished with his assessment and neuro checks, I told him I would be back soon and to let me know if he needed anything. His mother followed me out into the hall as well.
She asked me if I could go in later when she wasn’t there, and sit with him and try to get him to talk. She had tears in her eyes as she told me how depressed he was. He felt like there was no hope. He had had surgery before, but the seizures had returned. He was here to be evaluated for a second surgery. Her face was so careworn under her white bonnet, and her voice was very soft. I could see how tired she was. I told her to just go back to the guest house and rest. She was so incredibly appreciative for the respite.
As I passed Jeremy 1’s room, I glanced in and saw him back in bed watching the game. He smiled at me and asked me if I was a baseball fan. Then he asked if I had a minute to watch the game with him. I checked the times on my scheduled meds and could spare about 20 minutes. So I stood next to him and we watched the game. He asked me a lot of questions about my life. He was inquisitive, but respectful, and said, “If I’m getting too personal, just slap me.” It was so endearing, and I kept talking to him because I knew how much time he spent with his mother and that he just wanted the opportunity to have a conversation with a woman when his mom wasn’t around. When she returned after being away for some time and saw me standing there engaged in conversation with him, she quickly excused herself and waited in the hall instead of coming in and joining us. She wanted her son to have a little privacy so he could keep talking to me – so he could feel more like a man even if only for a few minutes.
After I got caught up with everything, I went back to Jeremy 2’s room. I got him out of bed and told him we were going for a walk. Ambulating patients was usually done by ancillary staff, but I wanted him to know I cared, so I did it myself. When I had the time, I liked to walk with patients and just chat with them anyways.
I held his arm as we walked slowly up and down the hallway. He towered over me. Other staff members joked with him as we walked along, telling him I had a crush on him and that I insisted on walking with him myself. We did everything we could to make our patients feel better. I did most of the talking, but he was engaged nonetheless, and his spirits were lifting.
After I got him all hooked back up again and situated in bed, his mom returned. She told me she wanted me to have something. Accepting gifts from patients is something you don’t do unless it’s something like baked goods or flowers. She had bought a Christmas ornament for me in the gift shop and really wanted me to have it. It still hangs from the rearview mirror in my car today.
Jeremy 2 did have his second surgery but was admitted to the ICU with complications. I visited him in the ICU twice. He was aware I was there, but couldn’t speak. He passed away in the ICU at the age of 22.
I got to know Jeremy 1 pretty well while he was in the unit. If at all possible, he asked for our patient care assistants to accompany him to the bathroom and to clean him up, instead of me. His family was around all the time and I had wonderful conversations with his mom and dad. She gave me the web address to his Caring Bridge site which kept family and friends updated on his condition.
Then one day something awful happened. I heard his bed alarm go off and rushed to his room with a few other staff members. He had tried to make it to the bathroom by himself but didn’t make it onto the toilet in time. His back side was covered in feces from head to toe and it was on an entire wall in the bathroom. I have seen a lot in my nursing career, but this was the worst case of explosive diarrhea I had ever witnessed. There were three of us there and we were all working as quickly as we could to clean him up and get him back into bed. He was leaning on the bathroom wall with his back to us – completely exposed, legs spread and naked, as we wiped him down. He kept repeating how embarrassing it was and how sorry he was over and over again. We couldn’t reassure him enough that we had seen it all before and it was nothing to be ashamed of. But his humiliation at that moment brought me to my knees. My heart broke for him.
Of course we all carried on as if nothing happened. But each time I interacted with him from that day forward, he wasn’t quite the same. He left the unit once again with new medications and the hope that they would work to keep him seizure-free. His mom begged me to stay in touch with him after he left, and I did, through his Caring Bridge site for a long time. But the last time I was in touch with him, his mother told me that his seizures had returned.
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