Author Archives: Abby Wuellner

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.

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….

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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.

 

Finding Strength

Heather Vincent is an occupational therapist at St. Louis Children’s Hospital, where she works with children in the neurorehabilitation unit. She joined the team more than 5 years ago, after having worked in an outpatient clinic. She says the patients she has treated have inspired her in countless ways – patients like Cougar Clifford, recently featured in “The Frontline for Hope.”

Heather and Cougar

I have so many memories of Cougar while he was at Children’s, but one of the most vivid happened on the day he left. A couple of us were getting ready to go out to lunch just after one of Cougar’s sessions, and he asked if he could go with us. We all kind of looked at each other and said, “Well, we’d have to get permission.” To that, he said, “Ask forgiveness, don’t ask permission!”

That was such a Cougar comment. But, of course we didn’t go that direction. We asked permission. His team wrote the order saying he could go with us, and we went just down the street. There we all were, sitting outside at lunch, and here’s this 15 year old who can’t feed himself. He orders soup, but he’s totally not embarrassed by us feeding him. And at one point, he just stops, looks at all of us, and says, “I’m so sorry I had to go through all of this. But all of you have been placed in my life for a reason. And I feel so blessed that I met each and every one of you.”

Cougar wound up a neurorehabilitation program patient the same way so many of our kids do. He was the victim of a freak accident. Cougar was so active before. He did a lot of activities we could never endorse. He did Motocross racing and was on a motorcycle. But he did those things as safely as possible. He wore a helmet and safety gear. He knew how to fall. But then one night he was hanging out with a bunch of his buddies, playing in the snow. He did a flip into a snowbank that he thought was snow through and through, and it was ice underneath.

A few days later, I met him in the Pediatric ICU. At that point, not only was he paralyzed from the neck down, but he couldn’t speak. We were trying to come up with a system so he could communicate, so we had a chart and would have him look at a letter, then look at another letter, and he would spell out what he was trying to say. Someone asked him, “What do you think of our communication device?” And he spelled out, “Rudimentary.”

A lot of our teens come to us in similar situations, and they are understandably angry. They resist  and they fight, and then they eventually come around. But with Cougar, I saw that spark in him from day one. Even in the PICU, he knew everything he needed to do. It was painful and uncomfortable, but he got it. He knew what we were doing and why, and he never resisted. He was always ready. So he got the most out of every therapy from the beginning. He knew he was here for a fixed amount of time, and he wanted to get the most out of therapy that he could.

When he first came in and we first started working with him, he was dependent for everything. He couldn’t roll, he couldn’t sit up, he couldn’t feed himself or brush his teeth. He had nothing. The physical therapist and I spent two hours a day with him, every day. Working to regain enough strength to do even the most basic tasks is inexplicably challenging. But he was always positive. He always worked with us. And when our time was up, he always asked if we had more time and if he could do more work. He always pushed himself.

I think about those sessions and about his comment at lunch that last day, and I just sit back in amazement. He’s a teenager. He was 15 when he was with us, and turned 16 just after he left the hospital. How, at that age, do you find that strength within yourself – not only to take care of yourself, but to reassure those around you that everything will be okay? Cougar befriended so many kids while he was here. He was a big brother and an inspiration to those he met, and I know he will continue to inspire the patients who follow him. He’s certainly inspired his therapists.

Slideshow (16)He came back to visit last week, and he can almost transfer himself independently. He still needs a little help, but he can feed himself. He can use his phone. He can wheel himself in his wheelchair. He can’t go very far, but he can move around. We’ve seen incredible progress. When he left the hospital, he couldn’t use his phone. He couldn’t text, he couldn’t control it. He didn’t have the finger movement. But today, he was holding his phone, showing me stuff on Facebook, and he could navigate through his entire phone to do whatever he needed to do.

I remember him once saying, “I know that even if I don’t get back use of legs and my hands, I’ll be able to do something amazing.” And he will. He’s bright and driven and capable. Whatever he chooses to do, he will be amazing, because he is an amazing, amazing kid. It’s like Cougar said – I’m sorry he had to go through all of this. But he was placed in each of our lives for a reason, and we all feel so blessed to have met him.

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

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