Category Archives: News

Mother of Children’s heart patient writes book

Charlie was born in 2005 with a congenital heart defect. (Photo courtesy of Mindy Lynn)

Charlie was born in 2005 with a congenital heart defect. (Photos courtesy of Mindy Lynn)

 

Charlie and Mindy Lynn

Charlie and Mindy Lynn

Embracing Charlie, a book by Minneapolis author Mindy Lynn about her son, a young Children’s patient born with a congenital heart defect, was named a finalist in the Christian Inspirational category of the 2014 USA Best Book Awards.

In the book, Mindy Lynn writes about her family’s emotional journey since Charlie’s birth in 2005.

Embracing Charlie is available in paperback; for the Amazon Kindle, Barnes & Noble Nook and at Smashwords.

 

Healthy childhood development important for all

Mike Troy, Ph.D,

Mike Troy, Ph.D, LP, is Children’s medical director of Behavioral Health Services.

By Dr. Mike Troy

I had the honor this past week of participating in a panel discussion about the importance of early childhood development to healthy communities. Hosted by Healthy States, an initiative of American Public Media and Minnesota Public Radio, the topic of the evening was “Community Responses to Toxic Stress.” As readers may know from our recent report and community engagement work, the subject of early childhood development is near and dear to my heart and a significant focus of Children’s Hospitals and Clinics of Minnesota.

My colleague and friend, Dr. Megan Gunnar, of the University of Minnesota’s Institute of Child Development presented scientific research on the essential role of a safe and nurturing social environment for healthy brain development. She also described how high levels of environmental stress in infancy and early childhood can lead to enduring problems in learning, physical well-being and social development. We know that birth to age 3 is an incredibly formative time for a developing mind, with 700 new neural connections made every second. But if a child lives in an environment with persistent challenges (toxic stress) such as poverty, poor nutrition and inadequate housing without the buffer of positive caretaking relationships, it prevents those connections from forming in an effective and efficient manner. Experience shapes brain architecture, and a poor early foundation affects development throughout the lifetime.

Panelists MayKao Hang, president and CEO of the Wilder Foundation, and Sondra Samuels, president and CEO of Northside Achievement Zone, and I discussed how our organizations are helping to mitigate toxic stress and foster healthy child development. I left this lively discussion energized to continue Children’s work with community partners to help foster healthy development in children. Some of my thoughts include:

  • One way parents and community leaders can help is to encourage consistent monitoring of child development. At each well-child appointment and over time, we screen our young patients for normal development and identify challenges. Early intervention is key and can change the trajectory of a child’s life.
  • We can motivate leaders and others to action by educating them about the science of early brain development and the unequaled opportunity for healthy development that is presented during the first few years of life. Behavioral and emotional problems often have their roots in unhealthy conditions (toxic stress) in early, foundational stages of life.
  • What babies need is essentially the same across all communities: attentive and loving relationships, safe and stable environments, healthy food and developmentally appropriate activity.

Healthy development happens in the home and in the community through relationships with families, friends and neighbors. We all can play a role in supporting a strong start. Our collective focus must be on healthy development for all children.

Mike Troy, Ph.D., LP, is medical director of Behavioral Health Services at Children’s Hospitals and Clinics of Minnesota.

Ebola preparedness prompts teamwork, unlikely partnership

Mary Anderson, president of the American Sewing Guild Minneapolis/St. Paul Chapter; Dave Overman, Children's president and chief operating officer; Lori Clark, ASG Minneapolis/St. Paul Chapter publicity chair and president-elect; and Roxanne Fernandes, Children's chief nursing officer, display prototypes of powered air-purifying respirators used for training purposes.

Mary Anderson, president of the American Sewing Guild Minneapolis/St. Paul Chapter; Dave Overman, Children’s president and chief operating officer; Lori Clark, ASG Minneapolis/St. Paul Chapter publicity chair and president-elect; and Roxanne Fernandes, Children’s chief nursing officer, display prototypes of powered air-purifying respirators used for training purposes.

When manufacturers and suppliers of the safety equipment necessary to treat Ebola patients announced they would be judicious with where they send it to ensure its availability to those that need it, health systems across the U.S. were challenged to use critical thinking in their preparation and training plans.

As one of four hospitals — and the only children’s hospital — in Minnesota selected to care for Ebola patients, if necessary, Children’s Hospitals and Clinics of Minnesota has been training while using a limited quantity of personal protective equipment (PPE) and powered air-purifying respirator (PAPR) face shields to familiarize staff.

Members of the American Sewing Guild Minneapolis/St. Paul Chapter work on training PAPRs at Good Shepherd Lutheran Church in Inver Grove Heights.

Members of the American Sewing Guild Minneapolis/St. Paul Chapter work on training PAPRs at Good Shepherd Lutheran Church in Inver Grove Heights.

In the event of a real-life Ebola case, Children’s would be supplied with the necessary equipment by manufacturers. In the meantime, for training and simulation purposes, a cross-functional team at Children’s that included the executive team, Center for Professional Development and Practice (CPDP), Materials Management, Lab, Maintenance, Respiratory Therapy, Safety and Security, and members of the American Sewing Guild Minneapolis/St. Paul Chapter launched an effort that enables staff to wear PAPRs that create a more ideal practice or simulation environment.

The idea for mocking up PAPRs for training originated from Karen Mathias, director of the Simulation Center. On Oct. 31, Roxanne Fernandes, chief nursing officer, and Lila Param, interim director for CPDP, traveled to Hancock Fabrics in Minnetonka to find material that would work for a training PAPR hood prototype. After talking with the store manager, they were given the contact information for the sewing guild.

On Nov. 3, Fernandes emailed members of the guild, which responded within 30 minutes that they were ready to help.

“When I saw it, I thought, ‘Ooh, this is one we need to follow up on really fast,’ ” Lori Clark, publicity chair and president-elect of the Minneapolis/St. Paul chapter, said. “We have people in the guild who sew everything.”

Clark and guild president Mary Anderson visited Children’s – St. Paul that afternoon to see the real PAPRs and discuss a plan for creating 25 training hoods.

On Nov. 4, they, along with member and newsletter editor Emily Schroeder Orvik, enlisted nearly a dozen volunteers and set up sewing shop at Good Shepherd Lutheran Church in Inver Grove Heights, where the guild held its annual meeting and workshop earlier this year.

“In general, community service is one of the major tenets of our organization,” Anderson said. “To me, this jumped out because my grandson had an emergency appendectomy at Children’s.”

Mary Anderson wears a training PAPR created by members of the ASG Minneapolis/St. Paul Chapter.

Mary Anderson wears a training PAPR created by members of the ASG Minneapolis/St. Paul Chapter.

“The fact that we can help Children’s prepare for something I hope they never have to face is a really good feeling,” Clark, whose daughter-in-law coincidentally is a pediatric nurse at another Minnesota hospital, said. “This is the most-unique request we’ve had.”

Before any sewing could be done, though, materials had to be gathered and made.

Paul Benassi, director of facilities, picked up DuPont Tyvek HomeWrap from Menards to be used as the main material for the training hoods, while Biomed engineering manager John Hendricks made 25 wooden blocks that match the weight of the air circulator worn on the belt of PPE to ensure as close-to-real-life training experience as possible.

An initial training hood was made out of the Tyvek wrap, but the material turned out to be too stiff and noisy. After making modifications to the pattern and a trip to Rochford Supply in Brooklyn Park, the group found a non-woven fabric that more closely mimics the material used for the real PAPRs.

The guild completed construction of the 25 hoods by its Nov. 10 goal.

First-year nonprofit raises more than $62,000 for Children’s pain clinic

From left: Betsy Grams, CycleHealth executive director; Andrew Warmuth, Children's physical therapist; Kristina Swenson, CycleHealth Kid Advisory Panel leader; and Tony Schiller, CycleHealth chief motivator, pose for a photo Monday, Nov. 17, 2014, during an awards banquet to recognize the $62,800 CycleHealth raised for Children's Hospitals and Clinics of Minnesota.

From left: Betsy Grams, CycleHealth executive director; Andrew Warmuth, Children’s physical therapist; Kristina Swenson, CycleHealth Kid Advisory Panel leader; and Tony Schiller, CycleHealth chief motivator, pose for a photo Monday, Nov. 17, 2014, during an awards banquet to recognize the $62,800 CycleHealth raised for Children’s Hospitals and Clinics of Minnesota.

The new pain clinic at Children’s Hospitals and Clinics of Minnesota is the beneficiary of a generous group of kids.

CycleHealth, a first-year, Minnesota-based nonprofit, raised $62,800 with its first annual BreakAway Kids Tri at Lake Elmo Park Reserve in August. Four hundred forty-six kids competed in the triathlon (swim, bike, run), with 126 children raising money for Children’s.

Members of CycleHealth’s Kid Advisory Panel, which is comprised of the group’s top fundraisers, chose Children’s as its charity partner. A check was presented to Children’s for the Kiran Stordalen and Horst Rechelbacher Pediatric Pain, Palliative and Integrative Medicine Clinic at an awards banquet Monday night in Minneapolis.

Q4_mighty_buttonThe clinic, named after late Aveda founder Horst Rechelbacher and his wife and business partner, who donated $1.5 million for the project, is scheduled to open in January at Children’s – Minneapolis.

“We wanted to be involved in a local venture,” Tony Schiller, chief motivator for CycleHealth, said of his organization. “The premise was that we’d go out and ask corporate sponsors and friends in the community to help create a new cycle of health in America by impacting kids and motivating them to do lifelong sports like running, biking, swimming – and raising money for charities. It’s not just about crossing a finish line, but serving.”

There are three spokes to the CycleHealth mission wheel: attitude, adventure and significance. Attitude represents the importance of how you think; adventure incorporates fun with fitness; and significance stresses that kids can inspire communities to solve big problems.

“We want to promote a love for sport and movement and to be healthy, as well as a kindness of heart and serving kids,” Schiller said.

Zack Novak, 11, of Minneapolis, participated in the first annual CycleHealth BreakAway Kids Tri and raised money for Children's.

Zack Novak, 11, of Minneapolis, participated in the first annual CycleHealth BreakAway Kids Tri and raised money for Children’s.

“The part that’s unique and attractive about CycleHealth is they believe in the power of kids,” said Jenna Weidner, 16, of Minnetonka, who raised $3,200 and has been fundraising for various charities since she was 8. “A lot of people are afraid to bring kids into it because of the perceived chaos, but kids are an untapped group with a lot of potential.”

CycleHealth plans to run educational, fitness and motivational programs through world-class, adventure-based events that benefit a charitable partner. Goals for the 2015 event to support the clinic include significant increases in overall participants, fundraising kids, and dollars raised.

“It was an incredible experience. Even if you didn’t win the race, it felt like you did,” said Zack Novak, 11, of Minneapolis, who raised more than $1,600 and is a member of the Kid Advisory Panel. “You feel like you did something for a purpose.”

Follow CycleHealth on Facebook, Twitter and Instagram.

Garth Brooks visits Child Life Zone in St. Paul

Country singer Garth Brooks holds a child during his visit at the Child Life Zone at Children's – St. Paul on Friday, Nov. 7, 2014. (Photo by Ali Hogan / Alberta Lu Photography)

Country singer Garth Brooks holds a child during his visit at the Child Life Zone at Children’s – St. Paul on Friday, Nov. 7, 2014. (Ali Hogan / Alberta Lu Photography)

Q4_mighty_buttonGarth Brooks was a hit during his visit to Children’s Hospitals and Clinics of Minnesota’s St. Paul hospital Friday. The country music superstar, who is in the middle of an 11-day, 11-show stay in the Twin Cities, signed autographs, posed for photos and visited with patients and their families to celebrate the opening of the Child Life Zone, an in-hospital play center for patients and their siblings.

Brooks stopped by patient rooms and visited with families and nursing staff before being greeted by a parade of fans that lined his walk to the Child Life Zone. Other celebrities on hand for the event included Minnesota Vikings tight end Kyle Rudolph, Pro Football Hall of Famer Anthony Munoz, former Minnesota Wild center Wes Walz, Minnesota Lynx guard Lindsay Whalen and boxer Caleb Truax.

PHOTO GALLERY: Garth Brooks visits Children’s – St. Paul

The Child Life Zone at Children’s – St. Paul is one of 11 zones in children’s hospitals across the U.S. and opened in February. The first Child Life Zone was founded in Dallas in 2002 by Pro Football Hall of Fame quarterback Troy Aikman. Brooks co-founded Teammates for Kids in 1999.

VIDEO: There’s something for everybody at the Child Life Zone

Minnesota Vikings tight end Kyle Rudolph (center) and Garth Brooks are greeted by fans on the third floor at Children's – St. Paul.

Minnesota Vikings tight end Kyle Rudolph (center) and Garth Brooks are greeted by fans on the third floor at Children’s – St. Paul. (Ali Hogan / Alberta Lu Photography)

Helping kids make sense of Ebola

(iStock photo / Getty Images)

(iStock photo / Getty Images)

By Jimmy Bellamy

Your young child has seen or heard news coverage about Ebola, which has led to questions or noticeable worries from your little one. What do you do?

Mike Troy, Ph.D., LP, medical director of behavioral health services at Children’s Hospitals and Clinics of Minnesota, provides some helpful tips for parents confronted with questions from their kids.

Answer questions asked

“It’s important for parents to respond to what their child is asking rather than making assumptions about  what you think he or she needs to know,” Dr. Troy said. “Make sure you’re addressing your child’s concerns, talking in ways that match their development level.”

READ (from AAP): What parents need to know about Ebola

“Be honest and reassuring in a way that’s developmentally appropriate and consistent with how you would typically talk about other concerning issues,” Dr. Troy said. “For very young kids and preschool-age children, they can imagine a lot of things, so they need reassurance and basic information without excessive detail. For this age group, reassurance from a trusted adult is more important than a logical, fact-based explanation.

“Whereas a school-age child in second, third or fourth grade may need reassurance as to why they personally are safe. For these children, accurate facts and a simple, logical explanation may be helpful. You can say things like, ‘It’s hard to actually get the disease’ and ‘So far it hasn’t been detected in Minnesota, and it’s safe to go to school.’ ”

Here are a few other facts that you can share with your children if they have concerns:

  • Although Ebola is a real problem in some parts of the world, they remain safe.
  • Our health care system is among the best in the world for taking care of sick people.
  • Ebola is rare and does not exist everywhere. When cases are found, the person with the infection is taken to a safe place to be cared for so that they can get better and not make anyone else sick.
  • Ebola is difficult to spread and is not an airborne virus, unlike the common cold. It does not spread through air, food, water or by touching things like a keyboard, desk or money.
  • Doctors and scientists who know a lot about Ebola are working hard to find ways to prevent or cure this illness.

Monitor what the child sees, hears and reads

“It’s absolutely reasonable to monitor your child’s news and social media consumption,” Dr. Troy said. “Because the coverage has been pervasive and often sensationalized, it’s prudent, especially with younger kids, to limit how much they’re exposed to it.”

Make your child feel at ease

The goal for adults caring for children is to help them feel safe without needing frequent reassurance. If reassurance is necessary, then the most important thing to emphasize is how rare the disease is in the U.S.

READ: Minnesota Department of Health’s FAQ about Ebola

Jimmy Bellamy is social media specialist at Children’s Hospitals and Clinics of Minnesota.

Spotlight shines on Midwest Fetal Care Center

Ian Kempel was born with an omphalocele. His story was featured on the TV show "The Doctors." You can see more about Ian and his parents, Leah and Todd, on The Mother Baby Center's Great Beginnings blog. (Photo by Jessica Person / First Day Photo)

Ian Kempel was born with an omphalocele. His story was featured on the TV show “The Doctors.” You can see more about Ian and his parents, Leah and Todd, on The Mother Baby Center’s Great Beginnings blog. (Photo by Jessica Person / First Day Photo)

Our partner, The Mother Baby Center, and its blog, Great Beginnings, are in the middle of hosting four weeks’ worth of unique patient stories from the Midwest Fetal Care Center.

Go on journeys with four remarkable families who have faced and overcome adversity under rare circumstances.

After summer off, Gavin faces next challenge with a smile

Gavin Pierson, 8, who underwent his third Visualase procedure for a brain tumor Oct. 23, smiles before school earlier this fall. (Photos courtesy of the Pierson family)

Gavin Pierson, 8, who underwent his third Visualase procedure for a brain tumor Oct. 23, smiles before school earlier this fall. (Photos courtesy of the Pierson family)

Less than 48 hours after surgery, Gavin spent part of his weekend jumping in a pile of leaves.

Less than 48 hours after surgery, Gavin spent part of his weekend jumping in a pile of leaves. Below: Gavin and sister Grace play in the leaves.

By Nicole Pierson

It has been eight months since Gavin has been in the hospital. Yes, you read that right, eight whole months. This has allowed for an amazing time of healing and the opportunity for Gavin to focus on so much more than his brain tumor. He spent his summer vacation doing things that 8-year-olds should do, like playing baseball for The Miracle League!

He also took advantage of his grandma’s pool and learned a few new tricks. He is now a pro at swimming in the deep end, doing cannonballs and flips underwater (both forward and backward, he would point out). As a family, we had bonfires, went canoeing and buried treasure at Pancake Island during our Fourth of July celebration.

Gavin and Grace PiersonAfter two years filled with nearly constant appointments, scans and procedures, we decided to take the summer off and provide Gavin with a much-needed reprieve. He desperately needed the break. Because he is medically stable and doing well, Gavin’s medical team agreed that giving him a summer away would be good. When considering his treatment, I am so thankful that Gavin’s team understands the whole child and that they realize medicine comes in many forms.

Throughout his time off, Gavin stayed on Palbociclib, a targeted therapy which is in pill form. At the end of August, he had a 3T MRI and PET scan to look closely at the tumor and help his medical team plan for his next ablation surgery. The MRI showed stability of Joe Bully, with no urgent concerns. From that appointment, we set up his third laser ablation procedure, which took place this past Thursday with Dr. Joseph Petronio. Less than 48 hours post-op, Gavin had tons of energy with minimal soreness. He felt so good he spent the weekend playing in a leaf pile, surfing the Web and challenging his little brother, Gage, to games on Xbox; his ability to bounce back is a testament to how minimally invasive the Visualase procedure is on its patients!

Gavin (left) and brother Gage play video games days after Gavin's surgery.

Gavin (left) and brother Gage play video games days after Gavin’s surgery.

Four days after surgery and Gavin is back at school today, and that is music to our ears. Due to his tumor and multiple surgeries, Gavin previously had lost the ability to read. Only a year ago, he had to relearn letters. But today is different. Now, Gavin is attending school full time as a third-grader at Ramsey Elementary, and he continues to make huge gains in reading and spelling. On the day of the surgery, he was spelling the words from his spelling test. This weekend, he read his Spider-Man chapter book.

Subscribe to MightyGavin’s doing well in math, too, scoring high in data and geometry. After missing 17 months of school and undergoing multiple brain surgeries, this is something to celebrate! Gavin’s strength in fighting Joe Bully is allowing him to fight all of the other side effects as well. He amazes us every day.

With Gavin’s third laser ablation surgery now securely behind us, we are relieved, but we still have so many mixed emotions. We know that we have to keep fighting, yet we have enjoyed his summer off so much that we are hesitant to re-enter a schedule full of procedures rather than swim dates. As always, we keep marching on. General Gavin is ready for the next phase of this battle. His soldiers are behind him, but he is leading the army.

Gavin checks out some toys on the Internet.

Gavin checks out some toys on the Internet.

Nicole Pierson of Ramsey, Minn., is the mother of 8-year-old Gavin Pierson, who is the first child in the U.S. with a mature teratoma brain tumor to undergo Visualase laser treatment.

What parents need to know about Ebola

Ebola

(iStock photo / Getty Images)

Parents, we know you have questions about the Ebola virus, which has dominated national and regional news coverage in recent weeks.

Ebola disease, caused by the Ebola virus, is one of a number of hemorrhagic fever diseases, according to the Minnesota Department of Health. Ebola disease first was discovered in 1976 in what is now the Democratic Republic of Congo near the Ebola River.

To learn more about Ebola, here are two great resources:

Children’s ranks among top social media-friendly hospitals

TOP75_CHILDRENS_HOSPITALSChildren’s Hospital and Clinics of Minnesota ranks No. 7 on the list of the Top 75 Social Media Friendly Children’s Hospitals for 2014, as selected by NurseJournal.org.

NurseJournal.org measured the social media presence of children’s hospitals in the U.S. to gauge which organizations best utilized their Facebook and Twitter accounts to connect with patients. Children’s scored 82.5 out of a possible 100 points.

Thank you to all of our followers across every social media platform for engaging with Children’s for health care news, trends, information and patient stories. And thank you, NurseJournal.org, for recognizing Children’s commitment to its patients, families and supporters.

NurseJournal.org also released its list of top 100 non-children’s hospitals.

Follow Children’s on Facebook, Twitter, Instagram, Google+, YouTube, Vimeo, Pinterest, Vine and LinkedIn.