Tag Archives: nursing

Grief and Gratitude: A parent’s perspective

Each month at St. Louis Children’s Hospital, a team reviews a number of nominations for a nursing award called the Daisy Award. Doctors or nurses typically nominate their coworkers for this recognition, but one recent nomination came from a parent. The words Colleen Miller wrote so beautifully illustrate the love and care the staff at St. Louis Children’s Hospital have for each patient, and the unparalleled love and dedication the staff see in the families who entrust them with their most precious gifts. With Mrs. Miller’s permission, we are sharing her letter of nomination. 

I am a nurse. A proud graduate of the old Jewish Hospital School of Nursing. I have been on the WashU Med Center campus for over 21 years. I have worked with adults in a variety of settings and seen many things over the years…some tragic and some wonderful. I have cracked ribs doing CPR, I have watched people die and watched people survive.

During all my years as a nurse I have never witnessed a more amazing group of dedicated professionals than those in the CICU and 7W.

image7Our only child was born via IVF in 2010. She was a much prayed for blessing who lit up our lives. At the age of 6 months, two days before Christmas, a fever and wet cough led to a chest X-ray in the ER. Our lives changed forever when we were told Layla’s heart was significantly enlarged. I worked cardiac, I knew what dilated cardiomyopathy was.

She was immediately taken to the CICU. When I handed her over to the nurse, I knew those hands were the best I could have placed her in. This was the night we first met Dr. Allan Doctor. His calm demeanor and thorough explanations made this awful experience the best it could have been.

Layla spent her first Christmas in the CICU. Her first glimpse of Santa was from her hospital crib. She was anointed on Christmas Day by Fr. Gray. By New Years we were out on 7W digesting all that was happening and all that was to come. 11 days after her admit, we blessedly took her home.
Over the years Layla had a number of stays in those two units. Each admit was difficult but all the while we knew we were blessed to have these wonderful people caring for our most precious gift.

By August of this year, at the age of 4, Layla’s heart was in need of more advanced treatment.

The time had come that had always loomed over our heads.

The time we feared the most.

The time we knew, that from here on out, my husband and I had zero control of what lay ahead.

Layla went into cardiac arrest during her cardiac cath on August 27th. Despite the amazing efforts of everyone, Layla passed away 11 days later. This time her 11 day admit ended with her going to her forever home.

She left this world the same way she came in…myself, my husband, a doctor and a nurse in the room.

Instead of the utter joy and elation when she arrived, this event was full of unbelievable grief and despair.

There are many things I will remember and learned from this last visit….

image4

I learned that when Dr. Canter rolls his eyes at you it means he likes you. I must be his favorite person.

I learned that many of the doctors watch the monitors in real time from home in the middle of the night and call with concerns.

I will remember the nurse who spent time with Dada and grandma washing Layla’s hair after the EEG machine was removed.
I will remember the nurse who put a bow in her hair. No one could wear a bow quite like Layla.

I will remember Mary Mehegan, RN, being in the room when we were told the damage Layla’s brain had suffered was too much…that our hopes to be listed for a transplant were gone….that we would not be taking our little girl home. She was crying along with us.

Mostly I will remember the final day. I will remember Dr. Doctor coming in on his day off, a Sunday morning, before he took his own children to Sunday school to be with us when we stopped the meds and pulled the ventilator….knowing it was like coming full circle as he was there the very first night of this journey.

I will remember Alli. Oh Alli, such a difference she made. She was only with us the final two days but she was placed there for a reason. Words cannot express the compassion she showed.

Alli stopped the IV meds, Alli pulled the breathing tube and Alli cried with us like she had known Layla forever. Like she knew her as the spunky smiling girl we did. She knew how much Layla was loved and how she will be missed so terribly.
At a moment in time that will be forever ingrained in our hearts…Alli will be there.

image6I had mentioned in passing at one point that Layla always preferred to be on my left hip and over my left shoulder. When she took her from me for the last time, Alli said “She liked the left shoulder, correct?” She placed my most precious gift over her left shoulder and walked her down to the OR for organ harvesting.

Watching Alli walk away with my sleeping doll over her left shoulder, snuggled in a blanket was a moment that cannot be described. Unbearable grief yet blessed and full of gratitude.

This was not how Layla’s story was supposed to end, but as usual, she had her own plans. Her time here was brief, yet poignant.

She was so loved by so many.

She lit up the room with her smile.

She taught many lessons to all who met her…whether to be a better parent, to not sweat the small stuff, to appreciate every little accomplishment or to fight like crazy with a smile on your face.

Some people live 80 years and don’t make an impact. Layla did it in just 4.

For us… Alli did it in 2 days. Our gratitude is unending. Thank you Alli, from the bottom of our broken hearts. You made a difference. You made the end of this journey a little more bearable…a profound accomplishment by simple gestures that will stay with my family forever. You should be commended for your dedication and amazing care during the most difficult time of our lives. You will never be forgotten.

“Hope anchors the soul.” Hebrews 6:19image8

Working among heroes

Dani Brewster, RN, works as a nurse on the hematology/oncology floor at St. Louis Children’s Hospital. Over the years, she and her coworkers have repeatedly heard different versions of the same question: “How can you work somewhere so sad?” According to Dani, “sad” is the last word she would use to describe her job. She tells From the Bedside about one very special young man, SuperSam Santhuff. SuperSam was Dani’s neighbor before he was her patient, and his story was told throughout the second season of The Frontline for Hope.

As a child, the word “cancer” was a part of everyday life for me. My younger cousin, Dylan, fought his battle with leukemia with the utmost of determination. Although I was young and sheltered from many of the scary things he went through, I heard about these wonderful nurses and doctors who stood by his side throughout it all. They were amazing in my young eyes; almost like superheroes helping him in his battle. Little did I know how very wrong I was. Spending one day, even one hour, on a pediatric oncology floor can make one realize just who the superheroes really are.

photo 2I have learned more about life and how I should live it from these little ones than I can ever thank them for. Sam Santhuff, or Super Sam as many know him as, and his family are no exception. The Santhuff family and I were neighbors when Sam and his twin sister, Ava, were babies. We were reunited when he began treatment on our floor for Rhabdomyosarcoma. That reunion with Sam and his family would change my life forever.

Sam went through eight months filled with numerous rounds of chemotherapy, proton treatments, radiation, and six surgeries before relapsing with this monster of a disease days after they had declared him disease free. He continued his battle through more chemotherapy and a bone marrow transplant. Sam’s battle with cancer ended September 14, 2014. But I refuse to say this young man lost his battle to cancer. In so many ways he conquered and rose above what cancer tried to drain from him. He rose above it, touched lives through it, and is now with the God he spoke so freely about… cancer free.

This is Super Sam through my eyes…

Sam, at his young age, faced the weight of cancer with the soul of someone much older than himself. His faith was miraculous. For such a young boy to be able to speak so openly about God and the place he holds in his life puts my actions of faith to shame. He didn’t speak of God as a “side note” or someone he heard about. He spoke about him with intention, as someone who he relied on to get him through the day. I struggled my whole life placing my worries in God’s hands as I was told to, but Sam, at the age of 6, has shown me how.

photo 1His sense of reasoning was astounding for such a young boy. Through pain of injections, nausea, long hospital stays or just plain crummy days, he could reason that these things had to happen for him to get better. This reasoning would be a battle for a mature adult.  Through this reasoning and understanding Sam also taught me a valuable lesson as a nurse… to slow down. Sometimes the tasks of the day just consume you as a nurse. You think that the only way to get through the day is by going 60 miles a minute and doing five things at once. The more and more I took care of Sam, heard his questions, and saw the comfort a little discussion about a shot or medication could bring, I realized how much a little patience and explanation could make on a little one’s day.

Sam’s giggle was contagious. And yes… throughout all of these treatments I heard this giggle often. How amazing…He laughed in cancer’s face. With every smile and every giggle he might as well have looked at cancer and said, “You didn’t win today!” Preceding these giggles was usually a witty remark that would make everyone’s day a little brighter.

photo 3And last, but certainly not least, Sam’s heart is indescribable.  I was about to give him a shot in his leg to boost his immune system cells one day when he gave me a beautiful flower he picked out himself. He wasn’t thinking of his battle… he thought of me that day. He wasn’t thinking of the battle he just had with cancer at the hospital, either, when he insisted on helping a homeless individual on his way home another day.  He faced more stresses in a day than you or I could ever comprehend; yet, he took time to think of others and to love others like we all should.

Sam’s battle grew stronger and stronger but his character never changed. He continued to give out “beef cake” hugs to those who loved him even through the pain. He was more concerned about the young boy coughing in the hallway, wishing he would get better, than worrying about the results of his final PET scan. Sam was a young man mature beyond belief, full of strength, full of faith, and full of love. He was witty, quite the jokester, and could light up the room within a matter of minutes. He was brave, polite and courteous, yet impeccably strong-willed. Sam was completely selfless. I have never met another individual who challenged me more to be a better person. He challenged me to slow down and embrace each moment in my day, to find faith, to love others and put them above my own struggles, and to smile in the midst of an awful day. Sam will make me a better nurse.

The little souls that wake up each morning determined to fight, they are amazing to me.  A giggle coming from the room down the hall, the sound of a motorized tractor making its rounds around the hallway, the faint drone of Mario cart on the wii, a ringing bell, these are the sounds of heroes not letting cancer win that day. I have heard too many times, “Isn’t it hard to work there?” or, “Isn’t that so sad?” To anyone who has ever asked, I am answering you with some questions of my own: Who wouldn’t want to work alongside their heroes every day? Who wouldn’t trade some hard days to have your life touched by some of the strongest, most inspiring individuals there are?

I wouldn’t trade this for the world.

 

From a transplant nurse: Lessons I’ve learned

BranchCarole Branch, a pediatric nurse practitioner (PNP) with Washington University School of Medicine and St. Louis Children’s Hospital, grew up in St. Louis. She first came to work at Children’s  in 1979, and has held a number of jobs since. She has served in her current positions – as the inpatient PNP for the lung transplant program and the PNP coordinator for the SLCH pulmonary hypertension program – since 1999. In her years caring for extremely sick children, Carole has learned many important lessons. She outlines her top 11 for From the Bedside.

When I was thinking about this, the thing I thought the most about was what I have learned from all of my patients. I have had the privilege of working with some real characters and some very special patients. I’ve learned something from each of them. These are the lessons I carry with me to work every day, and the lessons I hope each and every new clinician has the opportunity to learn over the course of a career.

1.     Recognize bravery.

These kids are the bravest people I’ve ever met. No exception.  To think they go into the operating room to have their lungs removed from their body and have someone else’s put in – they surrender control when they’re wheeled into the operating room. That requires unimaginable trust and bravery, the likes of which I can’t imagine.

2.     Mom knows best.

If a mother tells you her child doesn’t feel well and she thinks something is not right, believe her. In my experience, she’s usually right.

3.     There’s nothing stronger than a parent’s love.         

Parental love and family can be fierce, amazing and all-encompassing. The support I’ve seen families give these kids who have been sick for so long—that is humbling to watch.

4.     Support a family the way they need to be supported.

I have had one family where the child unexpectedly took a turn for the worse, and the mom asked me to read the bible to her. I was like, “I don’t read the bible!” But there I was, sitting, reading it, and they were asking me what I thought. I learned religion from them.

5.     Sometimes, it’s okay to just sit there.

Sometimes I may not have the answers, but I can find the time. Just sitting at the bedside is all you need to do. If you have time to watch a favorite TV show with a child or a stressed parent, it can mean the world.

6.     You can make dreams come true.

We’ve had weddings. One of the respiratory therapists donated a dress. The nurses made a cake and provided food and snacks. They were married in the garden with close family members and staff as witnesses.

One adolescent who had a lung transplant wasn’t able to go to her high school prom. So the nurses on the floor decided to create a prom. Our house staff assistant, who runs a charity that provides prom dresses at a minimum to no cost, brought in several dresses for this girl to choose “the one.” The nurses arranged lights, balloons and music. That night, we got to see our girl dance with her father. I still get goosebumps.

7.     Nurses are the best.

Respect the nurses and don’t ever underestimate their value to the care of the patient and family, their opinion and expertise.  They are the heart and soul of the hospital, experiencing each moment with the patient and family.  While the MDs may give the bad news, the nurses are the ones left behind to provide support, hug the parents, or just to listen.

8.     You can’t be positive all the time.

A positive attitude can be hard to maintain. I did some work on compassion fatigue, and I learned a lot about self-care and separating yourself. On my off days, I’m off. And when I’m here, I’m here. I do things to help me and support me when I am outside the hospital so that I can take better care of my patients when I’m at the hospital.

9.     The good days will pull you through the bad.

Some stories are incredibly uplifting; others, not so much. But when you see a patient come in that is so sick and pull through, it makes you feel so good. Let those moments reinvigorate you, and keep you going for the next patient

10.  Appreciate the sass.

One patient we have followed for a long time is particularly sassy. She can push my buttons pretty easily, and I can feel like wringing her neck – but then I take a step back, and realize, “Wow. She’s amazing.” The things this girl  has been through, and she keeps going. Her Make-a-Wish is coming up, to go on a Disney cruise. She says, “I want this done so I can swim on my cruise.” She has had a lot of badness in her life, but her sass and determination get her through.

11.  Allow yourself to be inspired.

You learn something every day from these kids and their families. Every day with they will teach you about life and love and getting through the bad stuff. The will to live is amazing. Allow them to inspire you.

On the oncology floor, nursing is about “Showing up.”

Mandy and CharlieMandy Drozda joined the hematology/oncology team at St. Louis Children’s Hospital more than thirteen years ago. She started as a registered nurse, and has since become a pediatric nurse practitioner (PNP). She’s gotten married, started a family and cared for hundreds of young cancer patients along the way, and as she tells From the Bedside, she’s still learning from patients and their families every day.

When I got out of school, I was offered three jobs. But I remember my mom saying, “If you were offered the hem/onc job, there’s a reason. You should take it.”

I listened to my mom. I took the hem/onc job, knowing I would need to learn how to be a nurse while learning the specialty – and I loved it. After two years at another hospital, I decided to venture to St. Louis Children’s and see if they had any Hem/Onc positions.  I literally came over, walked into the clinic, and asked at the front desk for the manager. They brought out the head nurse, and I said, “I want to work here, and I need to know how to make this happen.”

I went through interviews and the whole process, and was not hired. But I kept my eye on the division, and I came back the next spring to interview again. I will never forget Dr. Hayashi saying to me, “We didn’t hire you last time. How does that make you feel?” I told him, “I’ll keep coming back until you do.” Needless to say, our interview was complete and as they say, the rest is history. I was hired at that time.

That was more than 13 years ago. A lot has happened since then. I’ve experienced a lot of life. I got married, and I left this job for a few months. I realized I had made a huge mistake, I missed it, so I worked my way back in. Since then, I’ve had three children who have taught me many life lessons which, in turn, have taught me so much about my job.

My third child was born last September, and had a stroke during delivery. He spent five days in the NICU. He’s doing really well now, working hard at his weekly therapies, persevering. We are hoping he will eventually overcome his challenges. But I learned countless, priceless lessons from this situation, and when I first came back to work, it made me listen a lot differently. I learned what I didn’t know about crisis at all before – and that is when there is a crisis, it is all about showing up. If you just walk through the door, show up, and stand there, it starts. Some people need an hour, other families are good to go. Some need something entirely different. It’s my job to figure out how they need to be supported, and to follow through.

Charlie’s family needed something different than most. Charlie came in when he was little bitty. He was full of leukemia in his brain. His wonderful parents love him so much, but both work full time. So in the beginning with Charlie, it was hard, because although they do have a very set caregiver schedule, it was different every day. Mom and dad work, so they were around mostly on a day off, nights and weekends. We knew these parents were not choosing to not be here; they were petrified of losing their jobs and insurance. They were surviving. It hit home to me that if this were my family, the situation would be very similar. I, too, would need to be at work most days. I know that’s what I would have to do, and it would be the hardest thing in the world. So I’d want a care team committed to doing everything inside and outside the box to make sure I was in the loop.

That’s why now, when Charlie is admitted, I try to call mom everyday. We go over everything for the day: what the plan is, what changes have occurred, what her concerns are, etc. That was how I could be present for this family. We just talk and work out the puzzle. We put my pieces into hers, and figure out the plan.

Charlie is a little miracle. He’s just one of those kids that makes me think, “This is why I come to work every day.” I can’t even bring myself to think about what this little boy looked like in the PICU, because he was so full of leukemia. Everything is nearly resolved. All of it. Infant acute lymphoblastic leukemia (ALL) is a terrible disease, but he’s usually smiling or giggling. His progress is amazing.

He’s also a just few days older than my son. And, in the beginning, I wanted to say to his mom, “Quit your job. Come hold him.” But – he’s fine! He doesn’t have leukemia right now. He’s almost to the maintenance portion of his therapy. It doesn’t mean it can’t come back, but he’s pretty much thriving. He could be the small percentage that will sail through and be fine! Watching him go through it and deal with it, and his mom finding the strength to do what she thinks is right – enlisting the many people who love him to stay with him during the day, and trust the team of us here to care for him –it shows that it really does take a village. That village includes not only the friends and family they had before, but now me and the rest of our team.

So many people are involved in caring for these incredibly complex patients. They have their standard appointments and admissions for treatment, and they know who they’ll see for those, but then they rebound with fevers and illnesses, and they see new faces. The nurse practitioners in our division make sure each of these children receives the care they need; regardless of why they’re in the hospital, we’re the glue. Our residents are learning to be doctors; our fellows have huge research and clinical responsibilities. But every time one of our patients crosses the threshold of this hospital, their family knows the PNP they can lean on. Everybody plays a role, but to get to the nitty gritty of each child’s plan, you need to know what’s next. We’re the connection to that. We’re the GPS.  And, by default, we are privileged enough to wind up super close to our families.

These families, more than anything, just want their questions answered, and want to know that we’re all on the same page. Because whether it’s bad news or good, they want continuity of everyone being on the same team, and to know at the end of the day they did everything for their child they could do. That’s all anyone wants to look back on. That’s the greatest reassurance I can offer a family.

I always hear, “How do you do this?” In my mind, somebody has to do it, and either you can or you can’t. The only way to know is by doing it. Then if you do it and love it, there’s no leaving it. There’s nothing else that can ever give back to you like this job. When you look at the cure rate overall, it’s about 70%. So most kids are walking out of here, but you have to come to grips with the fact that 30% aren’t walking out of here. I’ve seen families on both sides of the statistics, so I know that if tomorrow things change, a child’s disease returns– I also know how to support parents down that road too. But just like Charlie’s family, I have no reason not to hope to beat the odds. At the end of the day, that is all anyone is trying to do, beat the odds – find another drug, another curative regimen, another chance. I am lucky enough to call this my job and it is truly my honor to play a role in these children’s lives. Children, like Charlie, are the sole reason that I continue to “show up” everyday.

Cancer nurse continues to celebrate patient she called “the life of the party”

Rema Sous MaloneRema Sous Malone has worked at St. Louis Children’s Hospital for nearly four years. She started as a patient care technician (PCT) while still earning her nursing degree from St. Louis University, and became a nurse when she received her bachelor’s degree in 2011. She’s still in school, now working toward her graduate degree while caring for patients. As Rema says in this post for From the Bedside, she’s met a number of children who have made an impact on her life, but Mert was extra-special. Meredith would have turned 20 today (September 2), and though she’s not here to mark the occasion, Rema and many others continue to celebrate her life.

Most people say that they choose their profession, but I wholeheartedly believe that my profession chose me.

Becoming a hematology/oncology nurse has been a dream of mine ever since I was a child. I distinctly remember sitting in my room and reading books about a little girl who attended cancer camp. I liked reading about her life and what she was going through. Although I never truly understood the perseverance and hope these children have until I started working with them as a nurse, my passion for caring for them started when I was very young.

My dream became a reality when I was hired to work on the 9th floor immediately after college. Working with these children was everything I had imagined and more, and I am truly honored to care for such wonderful people. When I tell others what I do, I often get the response “How can you do that?” I can quickly reply with, “I can’t imagine doing anything else, working with anyone else.”

Over the last almost 4 years that I have been a nurse, I have cared for many children with all different types of diagnoses. I truly believe that every patient that I have taken care of has impacted me in some way. I would be lying if I said there aren’t challenging days, but the kids and families that I take care of, along with my amazing coworkers, make it all worth it.

thoughtful mertA patient of mine who has taught me many life lessons was Meredith. Meredith was diagnosed with Acute Myeloblastic Leukemia in November 2012 when she was 18 years old. I was assigned to be her nurse the first day she was on our floor. I knew we would quickly become close; her personality was absolutely contagious. I cared for Meredith, also known as “Mert” or “Merty” nearly every shift I worked, becoming closer to her as time went on. Not only did I get to know Meredith during her treatment, but I also grew close to her family. Meredith’s parents and siblings were always at her bedside, caring and fighting fiercely with and for their loved one. Mert not only had the constant support of her family, but also her friends. The love and support of Meredith’s friends during her treatment was incredible. They came after school, to keep her up to date with the latest gossip and fashion (which would then be relayed to me), had Gossip Girl marathons and pizza and movie nights on the weekends. Even fighting cancer, Meredith was the life of the party.

Mert finished her treatment in May, went to prom, attended her high school graduation, and began her summer before she was off to Emory University. Her summer was halted when Mert found out during a routine check-up that her cancer had returned. It was an unbelievably devastating day but, just like before, Mert was determined and courageous and knew she was going to fight back hard, regardless of her fear. During the next several months Mert received more chemotherapy, fought vicious infections, and received a bone marrow transplant. Meredith also spent a lot of her time in the PICU, where I would visit her as often as I could. After a long and challenging several months, Meredith courageously lost her battle in November 2013.

Rema and MeredithAlthough I only knew Meredith for a year, she will forever affect me. There are not enough good things I could say about her. She was thoughtful, beautiful and intelligent. She always knew what was going on with her treatment and her body, and always asked questions. She did homework while stuck in the hospital – often scoring much higher on tests than anyone else in her class – and despite the fact that she was hospitalized most of her senior year, she graduated high school without a problem.

Meredith was a fashionista, a singer, and had a wonderful sense of humor. She always kept me up to date on the latest trends, would sing hours of Taylor Swift with her friends (and often times to Dr. Hayashi), and would walk around the floor talking in the infamous British accent she would break into when on Morphine.

Meredith was genuine, loving, and outgoing. The day that I came in to tell her I was engaged, she wanted to know every detail of the wedding planning.

Meredith was courageous, determined, and fearless. Although she knew she had a tough road ahead of her, especially after her relapse, she never complained, never gave up, and always chose to fight for her life.

Mert Boyers lakeMeredith will never know exactly how much she impacted my life or the lives around her. She may have thought that I was helping her, but in reality, she was helping me in so many ways. Being a hematology/oncology nurse can be challenging, but seeing how I can make a difference in the lives of my patients and their families makes every hard day worthwhile. Their hope, their strength, their courage and their determination is incredible. They are the bravest kids I’ve ever met, never quitting, even after the hardest day. Getting to know my patients and their families keeps me coming back for more. Every patient has impacted my life and career in some way, making me realize I should never take a single day or a single person for granted, and I am truly honored that I can take care of them day after day.

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