Tag Archives: St. Louis

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.

“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.

Parenting Kids with Cancer

Debra Spoljaric always wanted to be a “baby nurse”, but after her rotation at St. Louis Children’s Hospital, she knew she was meant to work with kids with cancer.  She says she could tell right away that the nurses loved not only their jobs, but the kids, too.  She received her nursing diploma in 1991, and started working as a floor nurse with the hematology/oncology team at Children’s right away.  She became a full time pediatric nurse practitioner with Washington University in 2004.  She has dedicated much of her career to working with children with brain tumors, and shares her experiences with two patients and their parents with From the Bedside.

When people ask me how long I’ve been here, I tell them I’ve been around forever.  I feel like I have!  While I was working on my nurse practitioner degree, I was also working as a nurse with Wings, our pediatric hospice program.  And that’s when I fell in love with the brain tumor kids.

I’ve always had a heart for oncology, but as I was wrapping up my program, Children’s was hiring into the neuro-oncology position.  Initially, I thought, “I don’t know if I can do it.”  It would be 24/7, working in it, living it.  But the brain tumor kids are so inspiring.  Whether they survive or don’t survive, they always seem to embrace the life they choose for themselves.

So much of that goes back to their families.  I’ve not only encountered inspiring patients over the years, but so many inspiring parents – parents who are under enormous pressure to make life-altering decisions with huge consequences for their kids – and I’ve watched so many do it with enormous grace.

Morgan with her mom, KristinWe had one little girl, Morgan, who was diagnosed a couple years ago with a glioblastoma multiforme (GBM).  That diagnosis is almost always dismal.  Statistically speaking, patients don’t survive long term.  Her mom was essentially a single mom, and from the very beginning she was all about embracing Morgan’s quality of life.

Morgan’s mom was just the perfect mom, if you can say that about people.  Morgan was still disciplined, she still had a bedtime, she went to school, she said, “Yes ma’am.  No ma’am.”  GBMs are nearly always fatal, but that didn’t keep Mom from treating her child like a 4-year-old who would survive – which is what we, as a neuro-onc group, teach our families.  Until your tumor tells us otherwise, we’re planning for you to live to 120 years old.

Debra and MorganThis family embraced that, and from day one it was all about quality of life, moving forward with treatment, and making it through.  Morgan did great.  She responded well to therapy, and while she suffered a few deficits, she adapted to those changes.  She went back to preschool.  She embraced life.

She finished her course of treatment and would come back for routine scans.  Before she even started to show symptoms, though, our neuro-radiologists could see the tumor was starting to grow again.  At the time, we didn’t have any clinical trials open here, so we looked for options elsewhere, and sent the family to another hospital for an open trial.  But when Morgan got there she told her mom she just wanted to come home.  She wanted her team.  Mom, again, chose to put Morgan’s quality of life and her comfort first.

Morgan

They came back to St. Louis, and we threw everything we had at this tumor.  She responded well initially, but when it came to a point where things stopped working and Morgan didn’t want to come to the hospital anymore, we supported her mom in the decision to transfer care and send her home.

Morgan was 6 when she died peacefully at home.  But for the years she was alive, her mom allowed her to embrace her life.  She treated her kid like she was living, but also acknowledged when things weren’t going well and helped her through the challenges.  She was just an amazing, amazing mom.

"Benjamin the Brave" during treatmentWe had another kid, Ben, who had a different kind of tumor, but a similar situation.  Ben was diagnosed with a medulloblastoma, a tumor in the back of his head.  His prognosis was much better than Morgan’s, but his journey would be dotted with its share of hurdles.

From a provider’s standpoint, all we can do is provide the nuts and bolts of it.  We provide the information, but parents have to make the decision and live with it for the rest of their lives.  Ben’s mom was also wonderful at hearing what we had to say, processing it, and choosing what was best for her kid.  She researched the options, and chose what she felt was in her family’s best interest.

Ben and his sister during treatmentMeanwhile, though, she’s managing the same everyday struggles that overwhelm even the best of us.  She was a single mom raising two kids, living with her parents, trying to work, coming here – then throw in the financial stresses of therapy co-pays and special eating needs and ER visits for fevers – but she handled all of it, and is raising a well-behaved, well-mannered young man who still has time to act like a kid.

Ben todayBen’s doing well today.  He’s taking Tae Kwon Do, and is improving.  He still has issues, gets tired, etc.  He’s about three years out, and there are always little bumps in the road.  But mom is grateful for the knowledge and answers we can provide, and recognizes that this is lifelong.  There are late effects from his treatment, but she embraces that, and understands that sometimes we don’t have all of the answers.  Together, though, we’re still a team, and we’re working on it.

In my time working with oncology patients, I’ve seen a child with liver cancer who was given a 1% shot at survival make it.  I’ve also seen a girl with a type of leukemia with a 90% cure rate die.  Those are the reasons I tell my families that statistics don’t mean anything.  And these are parents who took that to heart, and raised their kids like normal kids.

We tell our families you have to focus on today.  But it’s easy for me to sit here and say that, because I’m not living your life.  We’re hoping for tomorrow and planning for tomorrow, but just like parents of perfectly healthy children, you can’t let your kids take advantage of you because they know they can.  Set limits.  At the same time, take them for an ice cream cone and let the laundry sit for a day.  Go to a movie.  Snuggle with them.  Because if you’re raising good kids, who really cares about the dishes in the sink?

In 2010, when Ben was nearing the end of his treatment, he documented his time at St. Louis Children’s Hospital using the “Kid Cam”.  The resulting video is a look at Ben’s experience through his own eyes.

 

 

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