I am in awe of today’s My Challenge. I have to offer full disclosure here, I’ve known Laurie since we were in High School. Now our kids go to school together. That is how fast time flies. Last summer Laurie faced a life altering event. I thought her story was so important and compelling I asked her to share it here in the My Challenge Series. I am so thankful she was willing to participate.
Laurie is a nurse, not a professional writer, which makes her words even more powerful. Please welcome my friend…
My Challenge: Never forgetting what in life matters
Life can change in an instant. These are words that we often hear, but never fully comprehend until we are forced to, until our own lives are affected in a way that shakes us to the very core of our being. My whole world was turned upside down seven months ago, and in many ways, I will never be the same again.
It started off as a day like any other. It was a beautiful spring day on Cape Cod, the Saturday of Memorial Day weekend. I was looking forward to having the whole holiday weekend off, a rare and precious thing for a nurse, and spending some time at the beach with my family. I made the kids a quick breakfast and shuffled them out the door to their horseback riding lessons. We had a lot to get done that day.
Though I almost always stay to watch the kids ride, my allergies were acting up and I needed to go the pharmacy. The line was unusually long, and I did not get back to the barn until ten minutes before their lesson ended. I was disappointed that I would not get to see them ride. As I drove down the dirt driveway, I looked over towards the riding ring as soon as it came into sight, hoping that I might glimpse their last few moments in the saddle. What I saw instead still haunts me every time I close my eyes.
First, I saw a young blonde girl riding in the meadow closest to the driveway. Not my daughter. I then glanced over to see my girl, still in the ring- and actively falling to the ground, head first, from the top of the horse she was riding.
I tried not to panic. In that 15 second ride down the driveway, I told myself that she would be okay. She had been riding for five years and had yet to fall. I had always been told that it was not a matter of if she fell, it was a matter of when. People fall off horses all the time. She would be fine. However, when I neared the turn at the end of the driveway, I saw that she was lying motionless on the ground. That is when my whole world went still.
I hastily parked the car, threw it into gear, and took off running with the door wide open and the motor still on. I heard someone yell “she’s seizing; call 911”. In my panic, I ran back to my car to get my own cell phone. Then I ran through the barn and saw her, my baby girl, lying on the ground in a full-blown seizure. Her face was purple, and at first, she did not appear to be breathing. The nurse in me kicked in. Airway! Breathing! Circulation! I knew I had to stabilize her head, but I had to make sure she was breathing first. Over the next few seconds, her face started to turn pink and I could see that she was now breathing, although I was not sure how effectively. I immediately went to her head to hold it in alignment, and my brain was ordering me to “maintain c-spine”. She was at serious risk for spinal cord injury, and I noticed that she appeared to be decerebrating. This stiff, extended posture with the feet and arms pointing down is often associated with a grave prognosis, and it was at that point that I thought my life was over. I remember thinking about Christopher Reeves, blaming myself for letting her ride, and feeling that my 13-year old girl was never going to be the same again. I was hysterical, and I recall screaming repeatedly that she had to get to Boston, NOW! A lady that works in the barn was helping me hold her, and it turned out that she was a tech in the ER of the same hospital that I work in. Knowing that she was there and that help was on the way provided me with some comfort. At some point I threw my phone to the mother of the blonde-haired girl, and yelled at her to please call my husband. I am still not sure how she figured out who he was, and that his name was Eric, but she did.
After what seemed like an eternity, but in reality was only about seven minutes, the ambulance showed up. Jessie’s seizure had finally stopped, and she was now thrashing and moaning on the ground. I was desperately trying to hold her still, and in my terror, I could not remember if I was supposed to hold her down or move with her as she thrashed. I was holding her head, crying hysterically, as the paramedics approached me. One started asking me questions, and the other kindly offered to take over for me. My immediate, visceral reaction was to think “No! I have to do this for my daughter!”, but I quickly realized that was foolish, and was relieved to let him take over. It was then that I looked over and saw my eleven-year old son Christopher, standing alone, looking dumbfounded. I ran over to him and we held each other tight, each lost in our own thoughts. He had been riding on a horse right next to her and had witnessed the whole event. My husband arrived a few minutes later, and I could see the look of shock on his face. He had only been told that Jessie had a fall, and was thinking maybe she had broken her arm or something. He was not at all prepared for the scene laid out in front of him.
The paramedics placed a cervical collar on my daughter, rolled her onto a backboard, and strapped her safely onto the stretcher. As they loaded her into the ambulance, I ran to my car to grab my purse and the big box of tissues I had just bought at the store. I have no idea what compelled me to bring those tissues, but it seemed important at the time. The driver hopped in, and we were on our way to meet the med-flight helicopter at the tiny airport down the street. Cape Cod Hospital is not a level-one trauma center, especially for pediatrics. We were on our way to Boston. During the ambulance ride, I felt the need to help in any way that I could. I held my daughter’s arm while the medic placed her IV, and unscrewed the cap on the fluid line to make it easier for him. I was dimly aware that there was a chance I was being a pain in the neck, but he assured me that he appreciated my help. For that, I will always be grateful.
At this point, I noticed that she had moved everything, but was still very agitated and thrashing around. The other paramedic even stuck himself with a needle after her arm reflexively jumped when he stuck her. Suddenly, she yelled “My back hurts!”, and the relief that flooded over me was profound. She was going to be okay! She didn’t say anything after that, but I felt very reassured. When we got to the airport, I jumped off the ambulance to make room for the med-flight crew and to update my husband and son, who had followed behind in our truck. As I was filling them in on her progress, one of the firefighters approached us and said that she appeared to be seizing again, and that they were going to “secure her airway”. As a critical care nurse, I knew exactly what that meant. My child was being intubated.
Standing on the side of that grassy field, with my husband and son by my side, I stared at the helicopter that would soon fly my daughter to the best medical care in the world. To my surprise, they had already assured me I could fly with her. I started to cry again as reality weighed heavily upon me. I remember wondering what all the people driving by in cars must have been thinking, seeing an ambulance, a helicopter, and a hysterical mother in the middle of a small and quiet airfield. The med-flight paramedic came over, took me squarely by the shoulders, and told me that I could only fly with them if I remained calm the whole time. I could not talk to them, ask them any questions, or stand up if things started to go downhill. He told me that his name was Ron and asked if I was okay with all of that. I readily agreed, knowing that it was the only way I was getting on that flight, and assured him that I would be fine. I allowed myself a few more moments of hysteria, and then pulled myself together. Though this was a setback, my daughter’s brief wakefulness had been reassuring.
A few minutes later, Ron escorted me over to the helicopter while the blades were spinning over my head. I couldn’t help but think of that terrible scene in “Raider’s of the Lost Ark” where the bad guy gets his head chopped off during a fight with Harrison Ford. Ron assured me that I would not meet a similar fate. I tried to laugh, but it was difficult. I sat down in the helicopter and Ron helped me strap myself in and put some headphones on. The next few minutes were surreal, as I saw my now-intubated daughter for the first time. Was this really happening? I sent a quick text out to my friends to let them know what was going on. My hands were shaking as I typed, and I could barely get my thoughts out, but it kept my mind busy. Almost instantly, they started responding. I felt a little bit less alone.
Soon we were on our way. My baby girl and I, on our first helicopter ride; one that she would never remember, and one that I would never forget. I kept my promise of keeping my mouth shut and staying planted firmly in my seat, though it was one of the hardest things I had ever done. Kindly, Ron wrote me messages on his scratch pad and explained that they were giving her ativan, dilantin, and propofol. I watched the flight nurse unsuccessfully try to place an oral gastric tube and make another failed attempt at an IV. She was quiet and did not say a word the whole flight, as she was busy administering IV medications and maintaining a vigil over my daughter. I did see the two of them glance at each other with worry when Jessie started having some strange motor activity in her legs. It was difficult to tell if she was seizing again or possibly shivering, and I mouthed a question to Ron. He seemed a little unsure as well, but had things mostly under control. I felt calmed by his presence. Soon we were approaching the landing pad, and I looked down to see the big red H on the roof of Massachusetts General Hospital, a giant bulls-eye awaiting our arrival.
I will never forget the events that transpired. As we wheeled into the Emergency Room, there were *14* people standing there, ready for us. Immediately they set to work. They turned her, cut off her clothing, and quickly examined her spine. One technician performed an abdominal ultrasound to look for bleeding, and promptly stepped away. The ER physician began calling out her primary trauma assessment. I heard the words “no step-off noted”, and breathed another sigh of relief. Odds were very good that she did not have a broken neck.
A social worker appeared next to me, ready to get me tissues and water and anything else I needed. A pediatric resident stood by my side the whole time, prepared to answer any questions I might have. She did not realize that I understood every word that was being said in that room. To my dismay, Ron quickly announced that mom was a critical care nurse; I think I must have told them at the airport. Oh no, I thought to myself, please just let me by anonymous! I will tell them when I am ready. But it was too late; the cat was out of the bag. I then noticed a young, red-haired doctor that reminded me of Prince Harry. He started barking out orders and seemed to be the person in charge. I hung on his every word. Before I could blink an eye, they had whisked my little girl off to CT scan. The social worker walked me down to the waiting room. An elderly woman stared at me as I sat there, worried and scared; I could read the sympathy in her eyes as the social worker started asking me details about what had happened.
Within 30 minutes of arriving at the hospital, we were in the Pediatric ICU (PICU). The emergency room crew had left CT scan by the back exit, accidentally forgetting me in the waiting room. This gave them a five minute head start on me, and meant I did not get to enter the PICU at the same time as my daughter. I was asked to wait in the waiting room, as I have asked of countless family members over my 21 year career as a nurse. Until that moment, I never fully understood just how much I was asking of them. As a parent, I was completely dismayed to be on the wrong side of those doors. As a nurse, I understood the need to have a few minutes to settle my patient without the watchful eyes of family. I chose to give them those few minutes; thus began my interminable wait.
I called my husband to let him know we had safely arrived. He had been able to get in touch with my parents, and they were in the process of driving him and my son to the hospital. Thankfully, they were almost there at that point; being alone in the waiting room was nearly intolerable. My nerves were shot and I understood way too much about what was going on. Pretty soon, the trauma surgeon came out to tell me that the CT scan of her head showed some mild swelling, but there was no bleeding. This was great news! She was also moving everything, and he felt relatively assured that she would recover from this. I was now starting to feel hopeful again. The critical care-attending physician then came out to talk to me, and reiterated the same information. She was still not out of the woods, though, and they were going to order an MRI to better assess the swelling in her brain.
After 20 minutes or so, they finally let me in to the PICU. There were four nurses in the room still, tending to Jessie’s breathing tube, her monitors, and her lines. I knew all too well that four critical care nurses in a room at the same time means that a lot is going on They had given her IV mannitol to decrease the swelling in her brain, and were hanging a solution of hypertonic saline. One nurse in particular stood out to me as the nurse in charge, as she skillfully helped the primary nurse, fielded my questions, and slipped a new IV into my daughter. Prince Harry appeared again, and I learned that he was the pediatric intensive care fellow. The nurses all called him Dr. Sam, and I clung to that moniker. It was comforting and familiar, and Dr. Sam was very attentive. He explained everything to me in great detail, and respected the fact that I was a nurse. Not once did any provider talk down to me, nor did they appear aggravated by my constant presence. When my family arrived, it was me that explained all the equipment to them. It made me feel like I was useful and in control for a few minutes, rather than the helpless mess that I truly was inside.
Staying true to his kind nature, my son had brought my old stuffed dog, Sad Sam, to be with his sister. I had passed Sam down to Jessie when she was little, and he had shared his time between the two kids. It was time for both Dr. Sam and Sad Sam to work their magic.
By this time, my in-laws had arrived. They stayed with my husband and son while I was off at tests with our girl. At one point, my mom and Christopher went with me to the cafeteria so that we could get some food; I forced myself to eat, knowing that it was going to be a long night. As I saw people talking and laughing all around me, I couldn’t help but feel angry at them for acting that way. How could they be so happy when my whole world was falling apart? Didn’t they know that my daughter’s life hung in limbo just six floors above us?
The next ten hours were some of the darkest hours of my life. Dr. Sam put a central line in Jessica, so that they could easily draw blood and safely continue the irritating 3% saline. The EEG technician came and applied leads to her head, so that she could be continuously monitored for seizure activity now that she was sedated. Jessie had continued with the strange seizure-like behavior/shivering that she had displayed in the helicopter. The neurology team came by and assessed her. The shivering turned out to be clonus of her legs, and is usually associated with spinal cord injury. Not knowing I was a nurse, one neurologist was speaking in strict medical terms to the other. “Toes up with the Babinski reflex”, she said out loud. I had been holding Jessie’s hand, facing away from the doctors, when I heard those words. I whipped my head around. Toes UP? I knew this was a bad sign. Unless you are an infant, your foot should either completely withdraw or your toes should curl down when an object is run upwards along the bottom of your foot. Toes up could mean a lesion on her brain; my devastation returned. My husband was horrified when he learned that her leg movements were unintentional; he thought she was just restless while she slept. At some points, the mattress of the bed was moving up and down because her legs were shaking so much. As a parent, this was incredibly difficult to watch. As a nurse, I had never seen anything like it.
Off we went to CT scan again, this time for a full spinal scan. Later, we went back down for an MRI; the medical team considered having her braces emergently removed, as they cast artifact from the magnet of the MRI machine. Between the CT scans and the MRI, however, they were able to get the information they needed. The day nurse, Pat, had to travel off the floor with Jess multiple times during her shift. As any nurse can attest to, traveling with a patient on a ventilator with multiple monitors is no easy task. Dr. Sam came with us each time, which impressed me, though he was completely incompetent at steering a bed. Out of habit, I grabbed the foot of the bed and helped poor Pat. This was something I was good at; many nights I have circumvented the hallways of the hospital with a critical care patient, navigating with confidence. Dr. Sam looked at me sheepishly, and remarked that it was pretty bad when the parent was showing the doc how to steer the bed. I appreciated his attempt at humor, and that he didn’t seem put off that I had taken over. The same thing happened when he tried to untangle the travel monitor from Jess to put the MRI compatible one on. Clearly, this was a job for me, and I assured him that I was happy to do it.
At nine o’clock that night, Dr. Sam sat us down in the conference room and told us that Jessica had what is known as a diffuse axonal injury. It is similar to shaken baby syndrome, and occurs when the brain is rattled around inside the skull. Essentially, she had several micro-bleeds into her brain, including across her corpus callosum, which connects the two sides of the brain. There was absolutely nothing more we could do about it; surgery would not help. She also had a very small fracture of her scapula; she had landed hard when she fell, and her whole right side had taken the impact. In addition to her shoulder blade injury, she had some trauma to her right arm, road rash, and some abrasions on the ride side of her face. Her right eye was quite swollen, though nothing that wouldn’t heal in time. At this point, they had done all they could; the plan was to shut off the sedation and see if she woke up. All we could do was sit and wait.
It was now getting late, and my parents drove my husband and son home. Though Eric wanted to stay, we did not want our son to be without one of us, and they had no other way to get home. I was alone again, just me and my girl and her night shift nurse, Erin. Erin was efficient and competent, and tended patiently to our every need. At ten o’clock it was time to shut off the propofol. This was the moment of truth. I knew that propofol was very short acting, and that if all went well, she could be awake within twenty minutes or less. However, I also knew that she had received multiple doses of ativan for seizures, fentanyl for comfort, and had been given a paralytic for the central line insertion so that her legs would stop moving. This could take a while.
Time dragged on. I could barely think. My friend Meredith kept me company via text, keeping my brain busy while my child’s future remained in jeopardy in the bed beside me. Meanwhile, I had talked to and texted countless friends and family members and knew they were keeping us in their prayers. I know that they were all there with me in spirit while I held onto my girl and prayed, truly prayed, for the first time in a long time.
One hour passed, and nothing happened. Suddenly, she started to stir. She was grimacing and looking a little distressed, but wouldn’t open her eyes. Erin and Dr. Sam were both in the room and asked her if she could hear them. She nodded her head yes. My heart soared! She was awake! I stood up and grabbed onto her hand, and assured her that mommy was right there with her. No response. “Jess? It’s mommy, honey. I’m right here.” Still nothing. Dr Sam asked her if she knew whose voice that was. To my complete and total horror, she shook her head no. “Jess? You don’t know who I am?” She shook her head no again. She was unable to open her eyes when we asked her to. I couldn’t believe it; she had woken up, but would never be the same again. Everyone knows their mother! This was truly terrible. My beautiful daughter drifted back to sleep, and no amount of stimulation would rouse her. She was gone again.
I called my husband, distraught, as he was arriving home. This was so hard without him there! It was hard for him, too, being an hour away and completely helpless. We tried to give each other strength, but it was difficult. I texted my friend Meredith again, knowing she was awake and working, and was luckily having a slow night. She even offered to leave work to come up and be with me, but I told her that wasn’t necessary. It just helped to have someone to talk to.
At midnight, Erin decided she would change the linens on Jessie’s bed and give her a little backrub. It had now been 14 hours since the fall. When they rolled her on her side, she suddenly started moving and trying to sit up. She was desperately trying to talk around her breathing tube. I practically knocked poor Erin over to get to her side. When I got there, her eyes were wide open, and she was looking straight at me. I knew immediately that she had come back to me. She was awake! “Jessica”, I said. “It’s mommy. Do you know who I am?” She nodded furiously. I told her what had happened and that she had a breathing tube in, and wouldn’t be able to talk until it came out. I told her that her dad, brother, and grandparents had been there all day with her, and that it was now midnight. She then started writing on my hand- and spelled out the name of her best friend. She was asking me if Riley knew what had happened. We were supposed to be at Riley’s house the next day for a cook out, and both kids had been looking forward to it. Tears streamed down my face. I knew in that moment that my baby girl was going to be okay. Within twenty minutes they had the breathing tube out and she started talking. To this day, she has absolutely no memory of what happened; the last thing she remembers was walking around the ring about half an hour before she was thrown from the horse, and then waking up with a tube down her throat.
The next few days continued to be challenging, as she slept most of the time and was very groggy. On Sunday afternoon, she told me that she was seeing two of me. This could either be from the traumatic brain injury or actual damage to the eye, so the doctors were a little concerned. She had taken a pretty hard hit to the right side of her face and head. On Monday, she got out of bed with physical therapy and was completely unable to walk straight or even stand on her own. She continued to sleep for the majority of the day, and I grew more worried that the swelling in her brain was worsening. When she transferred to the general pediatric floor on Monday afternoon, I felt incredibly isolated. I now had first-hand knowledge of why my patients feel upset when they transfer to a lower level of care. Though the nurses are still amazing, it is hard to leave the security of the ICU. You feel much more alone and vulnerable on a bigger floor. It was lucky for us that the hospital census happened to be low, and even on the regular floor, Jessie’s nurse only had one other patient. This was exceptional to me, as the hospital that I work for always cancels staff when the patient census is low. What a dream assignment for any nurse! I asked the evening nurse if it was harder to care for the parents than the child, as I imagined it could be, and she acknowledged that this was often true.
On Tuesday evening my husband and son came to visit, and we went down to the cafeteria for some dinner. I had been at the hospital continuously since Saturday, and hadn’t seen my son since Saturday night. I looked around the cafeteria to the place where I had sat three days prior, and remembered the helplessness I had felt that night when the fate of my daughter was unknown. Things were looking so much better now. When we arrived back in her room, she was actually awake; this was the first time she had stayed awake longer than 20 minutes for the entire hospital stay. This was an encouraging step. On Wednesday afternoon, Jessica was discharged home. The double vision was still present, but was much improved. It took her another full week to regain her balance and be able to walk alone, and I hardly left her side. She missed four field trips, field day, her very first semi-formal dance, and the entire last month of seventh grade. The summer was dedicated to her recovery, going to doctor’s appointments and physical therapy, and slowly returning to normal activities. We did manage to squeeze in some great beach days, but the sun would hurt her head if we stayed for too long. Seven and a half months later, she continues to have mild headaches in school, but you would never know that she had a serious traumatic brain injury such a short time ago.
As I mentioned before, life can change in an instant. Since that time, I always remember what is truly important in this world. The experiences I had during those five days changed me as a person, as a parent, and as a nurse. I try not to take things for granted anymore. I don’t sweat the small stuff. And I never, ever make family members of my patients wait for more than a few minutes, unless it is absolutely necessary. I go out of my way to keep them informed and to be attentive to their needs. Until you spend a minute on the other side of the bed, you have no idea what it is like to walk in their shoes. I know now, and I will never forget. I often think of the paramedics, med-flight crew, Dr. Sam, Pat, and Erin, and the kindness they showed me on that first day. They always included me in the plan of care and never made me feel like I was a pain, even when I demanded to know why they were doing things a certain way and watched their every move. They might have rolled their eyes at me, but I was never aware of it. For these little things, I will always be thankful. For the life of my daughter, I will forever be grateful. I will hold dear in my heart the love we received from our family and friends, and I will never, ever forget.
Laurie is a kick-ass critical care nurse, mother and friend. One I have the pleasure of knowing for over (gasp) 25 years. I am still in awe that she allows Jesse out of the house without being surrounded by bubble wrap. When I relayed this to her, Laurie’s response: “I’m still terrified, but it’s just not fair to hold her back”
An amazing mom for sure.
Thank you, Laurie, for your friendship and your willingness to share your and Jessie’s experience. I know your patients are blessed to have you caring for them.
What’s your challenge is a series that was inspired by a program I created at Abby’s school. I am amazed at how honest and hopeful the challenges have been. Thank you to all who have contributed. To submit your challenge, please e-mail me at firstname.lastname@example.org