Tag Archives: St. Louis Children’s Hospital

Setting an undistracted example

As members of the trauma team at St. Louis Children’s Hospital, MaryAlice McCubbins, PNP, and Bobbi Williams, MSW, LCSW, have treated children and worked with many families after severe injuries suffered from everything from  falls to gunfire. A teenager who spent several weeks in their care as the result of a car accident, though, is inspiring them to spread a message they hope her peers – and theirs – will hear.

Ashlei was heading to a friend’s house to babysit. She couldn’t remember the directions, so as she drove down 141, she turned to type the address into her phone’s GPS. That’s all it took.

She was 16 and driving, window open, arm out, no safety belt. When she first started to roll, she was ejected from the car. She says she remembers screaming and her arm hitting the pavement. One of our trauma team members was driving the opposite direction at the time, and saw the whole thing happen. Even from a distance, he could see her injuries were so severe that as the only ACS-verified, level 1 pediatric trauma center in the region, we’d eventually see this teen at Children’s.

Sure enough, the first responders took her one place and the hospital transferred her to us. She lost the skin off her arm, suffered compression fractures to her spine, as well as a liver injury. All of that landed her in the pediatric ICU – waking in the PICU was her first memory after hitting her arm in the accident.

We see this all the time- and not just at work. We’ve all seen a car slowly drift into our lane, and we know. That driver is texting.
We call them accidents for a reason. These aren’t “on purposes.” People don’t mean to swerve into other lanes or lose control of a vehicle. It just happens. But we have gotten relaxed in the way we treat these very powerful machines. It only takes 5 seconds at 55mph to travel the distance of a football field.

We have to remember, it’s not just the act of reading or writing a text. It’s the act of processing the information. When we look at the phone when it dings, we divert our eyes from the road for at least five seconds – and that’s not the duration of distraction. If you just got an e-mail, and you’re processing that e-mail, and you’re still thinking about that e-mail you just got, you’re distracted. It’s not only that you looked at it and now you’re looking at the road, but your brain is still distracted.

And we can offer all the education we want. It’s not that teens aren’t hearing the message. They’re bombarded with it. But do they have an example to follow? Most parents are hard-working, maximizing their time, and that’s when they become distracted drivers. But rather than worry about checking that e-mail, I think we need to worry about what we’re teaching our children. It doesn’t matter what the household rule or even the law is; it matters what’s going on around them. Ashlei coming in definitely made me more aware and conscious of what I am doing. We’re more conscious in regard to all of the safety steps we’re taking – wearing a seatbelt, leaving

the phone in a purse or backseat – because what would that look like if either of us was injured in a distracted driving accident? The

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Ashlei struggled through weeks in the hospital and months of rehabilitation. She will still always have scars from this accident, but we can’t help but be inspired by how she has chosen to model them. A year after her accident, she wrote to us and asked what she can do to help. She’s taken it upon herself to educate her peers on the dangers and consequences of distracted driving. We always talk to families when they’re leaving the hospital, “If you had it to do over again, would you do anything differently?” They talk about wearing seatbelts or putting the phone away – but we catch them after the fact. Ashlei is catching them before, and hopefully her advocacy will prevent a few other children ending up in our care. She’s setting an example for all us. Shouldn’t we, as adults, be able to do the same?trauma nurse or trauma social worker at St. Louis Children’s Hospital got in an accident or suffered a brain injury because she wasn’t wearing her seatbelt? We’re even more aware of that than we are of our own safety.

Families show Fetal Care Center nurse the power of a positive attitude

Shannon Waller, RNShannon Waller is a nurse coordinator with the Fetal Care Center (FCC), a partnership among Washington University, Barnes-Jewish Hospital and St. Louis Children’s Hospital. After receiving her nursing degree from the Jewish College of Nursing, Shannon worked for several years on labor and delivery units. Two years ago, she accepted a position with the FCC, working with families who are going through exceptionally difficult pregnancies. The Wilsons were among her first families. Aliyah, featured in the first episode of this season of The Frontline for Hope, was born without a portion of her skull, a condition no child had previously survived. As Shannon explains in From the Bedside, however, knowing her family, no one is surprised Aliyah has beaten the odds.

I remember the first time I met Andrea Wilson. I’m a nurse coordinator with the Fetal Care Center, and part of my job is to make sure that all of our moms are familiar with the hospitals and spaces they’ll get to know while they and their babies are in our care. I remember Andrea saying I’d know her because she would be in pink. And she wasn’t joking! I walked in to meet her, and I saw this vibrant woman with a great smile wearing awesome hot pink pants. I knew from the start we would get along well.

aliyah parentsThe day Andrea and her husband went to learn whether they were going to have a son or a daughter was the day they learned something was wrong with their baby. It’s scary no matter what, but this was their first baby. They were excited, like anyone who is expecting a first child. They were nervous for all the normal, right reasons. But now, they were scared for all the reasons no one thinks they should have to worry. That first time I met her, we weren’t totally sure what was going on with her pregnancy. Initially, we thought the baby just had a mass on her face that would need to be removed.

Any family that has something going on with their baby struggles, but I think it’s an additional struggle when people have something craniofacial going on. No one wants their baby to look different, or for people to stare at their baby. It’s hard. But that never came up with her. I would bring it up, and offer to have plastics come in and consult. But it was a non-issue. To Andrea, this baby was beautiful. It didn’t matter to her.

Throughout her pregnancy, we met several times at her doctors’ appointments. And every time she showed up in bright colors, wearing amazing earrings, and beaming from the inside out. She was positive and excited for this baby from the beginning, and that never wavered. Whenever I’d see her name on my schedule, it would make me warm and fuzzy. I knew it was going to be a good visit.

I’m sure somewhere in the 3:00 in the morning times that haunt all of us, there were times she was terrified. But, to us, she always presented a strong, optimistic front. She seemed like a karmatic person – like what you put out is what you’re going to get. She believed things were going to work out fine.

I think attitude and support system make all the difference. Just being a normal pregnant woman, approximately 10 percent of women suffer post-partum. Then you factor in a baby that’s going to be high risk. It would be unrealistic to think everyone is going to be positive all the time. They’re going through one of the worst experiences of their life. At some point, you’re going to break. If you have people around you who can help hold you together and lift you up, then that’s going to make a huge difference. Coming into it with a core of, “I’m going to make the best of this situation,” can make a huge difference. Because you have all of these other chemical factors fighting against you. If you can bring forward as much positivity as you can, it’s going to help

I say it kind of in gest with a lot of my patients – I understand that no one wants to be my patient. I get that. I just do my best to be here for them and to be the best nurse I can be for them, even though I know they don’t want to be here.

One time I was talking with one of the physicians I work with, and he said sometimes being in this role is similar to being an oncology nurse. Even though it’s very different, emotionally, it’s similar. You’re dealing with incredibly sick people who physically and emotionally have so much going on. I think it has helped me realize there is a whole level of nursing beyond physically being at the bedside, being with a patient, and just being part of their experience and helping them . I get to act as an advocate for them and participate in those really, really hard conversations. Not all babies I see make it. How are we going to honor your baby while your baby is here? What’s important to you as a mom? Is it important to get these pictures? Are there family rituals that are important to you? Those are the conversations we try to have, so five years down the road when they look back at their experience, they can say that may not be the outcome we wanted, but we did everything we could to make the time we had special.

Aliyah at birthI was not in the delivery room the day Aliyah was born, but I remember one of the physicians who was there came and found me afterwards, and she was shocked. She said, “I handed her off, and she was literally missing her skull.” I asked her what she meant, and she said, “I looked at her, and I saw brain.”

I remember thinking, “That baby is going to die.” I never want that for any parent, but in this case, especially, we didn’t prepare for that. We were prepared for surgery and some deficits, but not that she would die. And that hit me like a ton of bricks.

Andrea’s amazing. Not that you want something bad to happen to anyone, but when someone is such a ray of sunshine…  I remember going and seeing her the next day, and asked what was going on. She was still rolling with it. She was a little rattled, but still had that spirit. She said she’s missing this part, and we’re going to figure out how to make it work. She said, “She’s going to be fine.”  I gave her a big hug.

She was right. I saw them a few times over the next several weeks, but I really remember the six-week post-partum appointment. Andrea told me, “Aliyah doesn’t even know she’s sick. She doesn’t know she has that mass. Other than having to look around it, she doesn’t know she has that.”

I think that is what keeps me going when I’m thinking I can’t do this job anymore. I get attached to these families and things happen and babies do poorly, then I take a step back and look at how amazingly strong they are, and how they find this ability to keep getting up and coming to the hospital and brushing their hair and putting on clothes that match. No matter when I saw her, Andrea was still wearing bright colors and fabulous earrings.

Before I started with the FCC, I was working on labor and delivery. I’ve been on this side for two years now, and it’s been really an amazing experience to be part of these families’ lives. It’s so different than labor and delivery. Because even though you’re with someone on L and D at one of the best moments of their lives, it’s still not the same connection that you form when you’re with someone for months through such a challenge in their life. I’ve kept in contact with a lot of the families. They’re kind enough to think of me and e-mail me pictures of how the baby is doing.

To hear that Aliyah is meeting all of her milestones and she has such a little sass about her brings me such enormous joy. It’s so mind blowing. But it also makes sense. Even when these babies are small, I can see how their parents’ attitudes are shaping who they will become. When we hit this huge road bump after she was born and things were worse than what we anticipated, I knew she was going to be okay. I knew Andrea was going to be okay because she was so optimistic with everything. There is no reason Aliyah should have survived her condition. But not only is she here, she’s thriving. It’s amazing.

aliyah today

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.

“One of a kind kid” inspires occupational therapist

Nicole Weckherlin joined the team in the Cerebral Palsy (CP) Center at St. Louis Children’s Hospital four years ago. She spent the decade prior working with kids with CP in the school system. As an occupational therapist, Nicole says these children have always motivated and inspired her, because therapy can make such an impact on their lives. Jansen is one such child.

We always say the greatest resources that we pass onto our patients are the ones patients have given us. Jansen and his family truly embody this.

NicoleJansenJansen has been a patient here for quite some time.  He has a diagnosis of spastic quadriplegic cerebral palsy and is dependent for mobility, transfers and self-care.  While he may be a very involved kiddo, his family surely doesn’t treat him like that, nor does he treat himself like that.  They have high expectations for him, and he certainly gives it right back to them. To say the least, I’ve been so impressed with him and his family.

Jansen and his family live about three hours away with an incredible community around them.  Recently, his community put on a huge fundraiser to help Jansen and his family. After collecting the proceeds, his family then turned around, came to our clinic and presented us with two iPad Modular Hose mounts. Jansen has one and whenever they come to the hospital, people stop and ask, “Where did you get that?” So here’s a family that took the opportunity to use their own situation to help others. Jansen’s mom simply asked that we find a good home for them, seeking no acknowledgment or anything in return.  This family has also donated other equipment such as Jansen’s stander and gait trainer for others to use. What a great example of paying it forward.

Jansen’s family truly defines what we at the Cerebral Palsy Center have hoped for: that their appointment is not just a doctor’s visit, but the chance to become part of a network and a community. We can give advice, information and consultation, and while perhaps there’s a level of expertise we may have, we haven’t lived the day in and day out taking care of a child with special needs. That’s a well-needed and invaluable perspective.

Jansen, though living with special needs, is a bright little guy with the coolest sense of humor. Once when at a Botox treatment, Jansen brought his Spiderman figurine to help him be strong for his series of shots. As a huge superhero fan, Jansen showed us powers of his own, bravely taking on the shots without any fear.  Afterwards, when asked if it hurt, he stoically replied, “I’m Spiderman, of course it didn’t hurt!” Only Jansen…he’s a one of a kind kid.

Diabetes Educator Learns from Her Patient

LaurenLauren Anderson received her undergraduate degree in Nutritional and Medical Dietetics in 2008, then returned to school in May 2009 for an accelerated Bachelors of Science, Nursing (BSN) program.  She received her nursing degree from University of Missouri – St. Louis in 2010, and began working at St. Louis Children’s Hospital as a nurse and part-time educator two months later.  She knew she wanted to be a diabetes educator from her time as an undergrad, and became a full-time educator at Children’s in October 2013.  She tells From the Bedside about Braden, a newly diagnosed 10-year-old she met several months ago, who continues to inspire her today.

I met Braden and his family a couple years after I started at Children’s. They were admitted on a Monday, late at night.  They all of a sudden got this call from their doctor’s office saying, “You have to go to the hospital immediately.”

It’s a very time-sensitive diagnosis.  They’re from Springfield, Missouri, so they packed all their things and rushed to the hospital. Then we found out first thing Tuesday morning that we weren’t covered by their insurance.  But we said, “You’re here, we’re going to teach you, we’re going to do everything we can to get you educated.”  They wouldn’t be able to follow-up here in the future, but we could at least get them situated with appointments at another hospital.

The financial aspect can be kind of overwhelming in and of itself, and this family was definitely overwhelmed. Mom was tearful, dad was nervous, but Braden, who this was all affecting, just pulled his whole family together and said, “You know guys, we’ll get through this.  It’ll be okay.”

He was inspiring to me, because we are usually holding the hand of the little child, and he was doing that for his parents, myself, and even the doctors – getting everyone on the same team and getting things going.  Throughout his whole stay, he was just an inspiration the way he took everything in stride.

Families are here for 48 hours, and as educators we spend about four hours with them one day and six the other.  We go from total strangers to knowing everything about them – their routines, their meals, their insurance, their employer.  We have a bunch of classes one-on-one with them if we’re able, where we very carefully try to ease them into the disease, teach them how to test their blood sugar and, eventually, give themselves insulin injections.

Thumbs UpWith Braden, though, in the first ten minutes of our class, he had already tested his blood sugar, said it wasn’t a big deal, and asked, “What’s next?”

He gave me a saline injection in my arm, then asked if he could give one to himself.  Most kids wait a day to get used to the idea, but Braden said, “Let’s just do it.  Let’s get it over with.”

He automatically went for the leg, which kids are usually scared to do.  He did it, looked at his mom, and said, “It’s no big deal.  Can I play the drums on Saturday?”

He was the ring leader of the family, which was kind of cool.  Sometimes the kids are kicking, screaming, on the floor, having tantrums – reasonably so.  They’re going to have to get four to five shots a day for the rest of their life.  I wouldn’t be cool with that.  I’d be having a fit.  But Braden, he just wanted to be able to do the things he did before.

I’d never seen anyone quite like him.  His spunk – he was also brilliant.  He is a really smart kid, and he picked up the carb counting math, which can really make or break the way a kid fares. For being ten-years-old, he was so together, and talented in so many ways.

In 1991, we had 62 diabetes patients in a year.  This year we’ll have 162.  It’s a more prevalent disease now.  We don’t know all the reasons why, but we do know you can manage it better now.  If you compare that to the early 80s – diabetes was almost an early death sentence.  We didn’t have the technology, so you were expected to be in the hospital more frequently, probably lose your vision, have kidney failure, maybe lose limbs with amputation.  Now, while insulin doesn’t cure diabetes, it makes it so patients will survive.  The life expectancy now is almost the same as any other person, which is amazing.  So in the last 100 years, we’ve come a long way.

I started as a nurse at Children’s three years ago.  I got my foot in the door, then became a full-time diabetes educator just a few weeks ago.  This is my dream job, but I hope I’m around long enough to be put out of business.  I hope we’re that close to a cure for diabetes.  Until then, though, I’ll take Braden’s example with me to each patient session I have.  He taught me to expect the unexpected with kids.  Don’t expect it to be a challenge, because kids tend to surprise you.  He was the perfect example of what we tell families: diabetes does not have to rule your life or ruin your life, you can work diabetes into your life.  I think he’ll blow everyone away by what he’s able to do.  Braden was diagnosed on Monday, and the next weekend, he was playing the drums again.  If patients can have a good, positive attitude in the beginning and start mastering the skills we want them to, then that gives them the power to master the disease and manage the disease.

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Within a week of his diagnosis, Braden was back on the baseball diamond and playing drums with his band.

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