Monthly Archives: August 2012

Teen patients welcome new space in Minneapolis

The teen lounge is open for fun.

Until last week, teen patients visiting our Minneapolis campus didn’t have a special space where they could escape the beeps of machines and stuffiness of a hospital room.

The Youth Advisory Council spoke, and we listened thanks to help from Magnolia/Best Buy. Now, patients and their siblings and friends are able to enjoy a space that feels more like a state-of-the-art basement and less like a hospital.

“Being out of my room just makes me feel better,” said Olivia, a YAC member who spends most of her time in St. Paul, which has had a space for teens called the Minnesota Wild Teen Room.

The new space features a 65-inch flat panel TV, several gaming systems, leather theater chairs, a computer desk, gaming table, and many DVDs and games.

“We’re excited to be able to offer a space specifically designed for teens. The teen room will be a fun and unique space for our adolescent patients to gather with family and friends beyond the hospital patient room,” said Christi Dady, a Children’s Child Life Specialist who works with the YAC. “The interesting design and the electronic equipment create a more home-like and comfortable environment where our teen patients can relax.”

The YAC collaborated with the Magnolia team at Best Buy to plan the lounge. Mason, a YAC member, said helping design the space has been his favorite projects at Children’s.

“I would always come here (to the lounge),” Mason said.

Daniela, also a YAC member, said being confined to her hospital room gets depressing. She hopes she can spend time in the lounge, where she hopes to make new friends.

 

 

2012 Paralympic Games: Putting one foot in front of the other

It’s easy to be inspired by Mallory Weggemann.

She literally swims laps around people like you and me – and does so using only half her body.

On Jan. 21, 2008, the girl who had spent more than a decade in a pool was paralyzed from the waist down after receiving an epidural injection to treat back pain. She was 18.

Three months later, Mallory, 23, was back in the pool as if she’d never left. That summer, she was competing. In no time, she was winning.

In two days, Mallory – the daughter of Ann Weggeman, an RN at Children’s PACU in St. Paul — will compete again, this time on the biggest international stage. She’ll be vying for gold in nine events at the 2012 Paralympic Games in London. The Paralympic Games are held parallel to the Olympic Games and are for athletes with physical disabilities.

“I’ve used the word ‘surreal a lot,” Ann says to describe her youngest daughter’s Paralympic debut.

Says her dad, Chris, “As a parent, it’s a pretty proud moment…It’s the ultimate swim meet.”

Mallory’s parents, siblings, brother-in-law, agent, coach, boyfriend Ryan and family friends will all be there to watch her.

Mallory is one of the most sponsored and decorated disabled athletes in the United States. She is sponsored by well-known companies including BMW, P&G, ZICO and Deloitte. In 2011, she was an ESPN ESPY winner for best female athlete with a disability. She holds 15 world records.

But it’s not her world records that make her family most proud. It’s how she uses them. Mallory’s success helps her help others. It’s given her a platform to share her story. She has spoken around the world. Some people wouldn’t be competing in disabled sport had it not been, in large part, for Mallory’s encouragement, Chris says.

It’s the impact she has on others that makes him proud.

Of the Paralympics, Ann and Chris wish the event was more visible. But to watch, you’ll have to go online. Unlike the Olympics, it won’t be broadcast on network TV in the United States.

“There are 4,200 incredible stories. Everyone has this journey to get there,” Ann says.

If anything, Ann and Chris hope Mallory will continue inspiring children and teens with a disability. In Mallory’s case, her paralysis has opened more doors than it’s closed.

“She doesn’t see herself as disabled; she just has to do things differently,” Chris says. “You have to put one foot in front of the other, even if you can’t move them.”

Follow Mallory during the Paralympics on her website, Facebook and blog, where the Weggemanns will post updates throughout the Games.

Staying healthy at the Minnesota State Fair

Today kicks of 12 days of jam-packed fun, food and more at Minnesota’s Great Get-Together.

We’ll be at the Minnesota State Fair every day at our Making Safe Simple booth, located at Randall Avenue and Cosgrove Street, across from the Fine Arts building.

We love the Minnesota State Fair and so do our kids.  As always, taking a few safety steps can ensure a fun time while keeping children healthy.  With a higher than usual number of cases of pig to human influenza this year (without pig to human to human transmission) taking basic precautions in the pig barns is wise.  We balance risks and benefits of the things we do every day including preventing infections.  So take a minute to think it through for your family.

You might have heard from the Minnesota Department of Health that the state recorded its first confirmed and a second probable case of a new influenza strain that people acquire through contact with pigs. The cases were reported in a pre-school-age child and an older sibling. MDH officials believe they were likely exposed to the new strain from pigs while they were at an animal market (not at a fair).

Before we eat our first Pronto Pup, we asked our infectious disease and infection prevention guru and Nurse Practitioner Patsy Stinchfield for a few tips so we stay healthy while we’re at the fair.

  • Wash ‘em proud!  Clean hands are still the No. 1 way to prevent the spread of germs. Wash your hands after exposure to animals or animal barns and before touching your eyes, nose or mouth in any way.
  • People who are high risk for influenza complications should skip the pig barns this year.  This includes infants and pre-schoolers, the elderly, pregnant women, the immunocompromised and anyone with a neurological or difficulty managing their own saliva.
  • If you do go to the pig barns (we know we will), don’t kiss the animals.  We agree – they’re cute – but don’t smooch them (in fact, looking at the pigs from 6 feet away or more is safest).
  • Wash bottles and pacifiers in hot soapy water after they’ve been in an animal exhibit area.
  • Oh, and, pork chops on a stick do not cause influenza so enjoy!

The MDH and fair officials have also discouraged fairgoers or exhibitors from eating, drinking or placing anything in their mouths while in the animal exhibit areas.

We hope to see you at the fair!  Stop by our Making Safe Simple booth and say hi.

Mom finds comfort in cancer research team after rare diagnosis

This is a guest post by Kim Sondergard, whose son Tony was diagnosed with cancer when he was a few months old. The Sondergard family recently attended the 2012 PPB Family Meeting at Camp Courage.

My son Tony’s entry into this world was a bit bumpy.

He was born with a fever and pneumothorax (air pockets) in both lungs. Doctors and nurses tended to him for four days in the special care nursery. When he was fever-free and able to keep his body temperature within a normal range on his own, my husband and I were able to take our baby boy home. For four months, Tony was healthy.

He developed a cough and a fever, so we took Tony to his pediatrician. A chest X-ray showed what his pediatrician thought was a cyst. It was thought to be a congenital cyst and could be removed through surgery. Tony was admitted to Children’s Hospitals and Clinics of Minnesota, where he had surgery. From his nurses, to his pulmonary team, to the surgeons, to his anesthesia team – everyone rocked!

During our follow-up appointment with the surgeon two weeks later, we learned that the cyst that was removed was abnormal. Our baby had cancer. It was a rare form of childhood lung cancer called pleuropulmonary blastoma, or PPB. I didn’t know how to react.

Tony

The surgeon made an appointment for us to meet with Dr. Yoav Messinger, an oncologist who specializes in this type of cancer and is among the personnel at the International Pleuropulmonary Blastoma Registry. The PPB Registry is a collection of physicians, scientists and data analysts from many institutions, including Children’s, who have been working together for 20 years to evaluate PPB cancer cases.

Dr. Messinger gave us a deeper understanding of Tony’s cancer, and he explained the treatment options. Unfortunately, there wasn’t significant research on treatment options because this cancer was so rare. At the time of our meeting with Dr. Messinger, we also were introduced to Gretchen Williams and Dr. Jack Priest – also part of the PPB Registry.

Tony’s dad and I, as well as our relatives, provided the PPB Registry with DNA samples for a genetic study. They have found in many cases children with PPB carry the DICER1 gene. However, no one in his family, including Tony, carries this gene.

Tony

Dr. Messinger, the Medical Director of the PPB Registry, knows genetic testing needs to continue. “If we can determine in advance which children are at risk for PPB, we will do our best to try and diagnose PPB when it’s in the earliest, most curable stage.”

Two months after Tony’s diagnosis, a CT scan indicated another spot on his right lung. We decided at that time we’d proceed with chemotherapy. Dr. Messinger and Dr. Priest also recommended the spot be removed. Ultimately, we learned it was scar tissue – not cancer.

For an entire year, Tony underwent weekly chemo treatments. He also had CT scans every three months. None showed recurrence.

This past May, Tony celebrated his third year of being cancer free. Next month, he turns 5. He’s happy, active and healthy – all a parent wants for her child.

I would not have gotten through Tony’s diagnosis without the staff at Children’s and the PPB Registry. They were there step by step.

I believe in and support the continued research of the PPB Registry, so they can determine PPB’s cause and how to cure it. Not all kids diagnosed with PPB are as lucky as Tony.

My oldest is going to college. How do I make the transition easy for her siblings?

This is a post by Jeri Kayser, who’s been a Child Life Specialist at Children’s Hospitals and Clinics of Minnesota since 1985. Her educational background is in child development and psychology. She has three children who have been a great source of anecdotes to help illustrate developmental perspective. They’re wonderful at being good sports about it.

If you’re a parent of a college-bound kid, your life has probably been taken over by filling out FAFSA forms, figuring out finances, deciding who’s bringing the fridge and shopping for dorm sheets. They really had to make them some weird size, huh?

You may not have paid attention to how this transition has impacted your younger children still at home. But, it’s not too late to think about what might work best for your family when your oldest leaves for college, especially if your oldest is just entering his or her senior year in high school this year.

There will be big changes and more subtle ones. Sometimes it’s the little changes that feel more disruptive because they have a way of sneaking up on you.

When our oldest left for school, it took our family forever to set the table for four people instead of five. When that fifth place setting was obviously unnecessary, our youngest would always groan, “Oh yeah, Zach’s not here.”

This shift in family life begins to firm up over that heavily ritualistic space of time known as senior year. Every sport or club banquet honoring seniors, every college fair, the ACT test, senior pictures, prom and graduation celebrations all remind us of what’s to come. At a grad party we attended this spring, I found a younger sibling greeting guests. She spied me, sighed and said, “This has been the ‘All Andrea, All Year- year.’ I’m sick of it!”

It can be a bit daunting to achieve balance between giving your kids the attention they need and preparing yourself, your college-bound child and their siblings for this next step. My hope is that the following tips will help your family:

Visit college with the entire family

Take your younger kids on some college visits. It’ll help them understand what college is about and why their big brother is  so excited. Plus, it’s a family trip! Many college visit programs include activities for siblings. Our youngest loved checking out the bookstores. It’s fun to get them a T-shirt from the chosen school because it’s a direct physical connection to their big sibling when they wear the shirt.

Involve siblings in graduation party prep

It’s a ton of work to get ready for a grad party. Assigning a younger child to sort through pictures and make a poster can be a huge help. It’s also a great way for everyone to reflect on all of the shared memories.

Move-in day: Get all hands on deck

Having siblings help on the day your freshman moves into her dorm is another set of legs to run up those three flights of stairs with all of the stuff, but more importantly it’s a great opportunity for them to see where their big sister will be living. They can also make their own imprint on the room by contributing with a picture, stuffed animal or shared item. When you leave, make plans for when your family will next see each other. Even if that isn’t until Thanksgiving, there’s comfort in knowing when you will see each other again.

Use social media

Facebook, Twitter, Skype, texting and emailing can be easy ways to stay in touch. Our kids share an iTunes account and have grown to love the fact that they can listen to each others’ current interests. When my daughter is missing one of her brothers, she likes to listen to one of their favorite songs.

Be mindful that your freshman needs time to establish relationships with new friends at college and most schools recommend that they stay at school for about six weeks without visiting in person. This is a fantastic rule and a tough one to follow, but it’s definitely worth it for their enjoyment of everything the college experience has to offer. Be ready to intervene if your younger children are communicating too much.

Send care packages

Every kid likes to get a care package. And there’s no better time like the present – when back-to-school shopping is in full swing – to start collecting shoe boxes for transporting goodies to your child. As you find items that would be of interest to your freshman, put them in the box and when you fill it up, send it off. Younger siblings can help prepare the care package.

Parents: You’ve got this. Here’s to a great school year!

Racing for kids who can’t

Gunnar Nelson is one of Mitch's All-Stars

On Saturday, 1,200 kids ages 7 to 17 will test their athleticism and race for kids who can’t at the MiracleKids Triathlon at Lake Ann in Chanhassen, Minn.

It was just two weeks ago that friends and family of 9-year-old Gunnar Nelson, an oncology patient at Children’s Hospitals and Clinics of Minnesota, toed the same line at Lake Nokomis in an effort to raise money for families of cancer patients. The races, two of the largest kids triathlons in the world, are organized by the Miracles of Mitch Foundation (MOMF), and Gunnar is one of “Mitch’s All-Stars.”

MOMF was formed by Steve and Becky Chepokas in memory of their son Mitch, and grew from a “pinky swear” between Mitch and his dad to continue helping kids going through cancer treatment. Mitch was 9 when he lost his battle with cancer.  MOMF provides financial and quality-of-life support to hundreds of families of children being treated for cancer in Minnesota.

Gunnar was diagnosed with Acute Lymphoblastic Leukemia in March 2011. His diagnosis came after he woke up with intense hip pain, developed persistent fevers and experienced general achiness that worsened, said his mom, Kelly Nelson.

His brother, 11-year-old Ryley, and his cousin competed in the Lake Nokomis event and raised money in his honor, Nelson said.

“Seeing how ambitious some of the kids were to complete the event and raise large amounts of money shows me kids are really doing amazing things to help other kids,” Nelson said.

That’s what the MiracleKids Triathlon and the MOMF organization are all about. And it inspires us. We at Children’s are proud to be the annual medical partner for the Lake Nokomis event.

”The MiracleKids Triathlons, ‘kids racing for kids who can’t’, not only support children going through cancer treatment, but also promote healthy lifestyle choices for all children in the battle against obesity – a top priority of Children’s,” said Dr. Joanna Perkins, a physician in Children’s Cancer and Blood Disorders Clinic.

Since its beginning in 2004, the MOMF has served hundreds of children with cancer and their families, Perkins said.  Their financial grant enables families to make house payments, utility payments, and other expenses, when parents are unable to work due to their child’s illness. They also sponsor many quality-of-life programs, including our annual Mitch’s All-Star Camp.  Children’s partnership with MOMF is an integral piece of helping our kids with cancer and their families along their journey.

Gunnar is currently in the maintenance phase of cancer treatment, Nelson said. He’ll continue treatment through September 2013. He takes chemo nightly.

Of her family, she said, “We go through a lot, but there’s always someone who’s been through even more.”

Gunnar has been a champion from the start, she said. “We call him a warrior,” she said.

Thanks to MOMF, warriors like Gunnar and their siblings get to attend Mitch’s All-Star Camp at Camp Courage in Maple Lake, Minn. During the camp, medical professionals from Children’s provide medical care and lead educational programming for the kids.

“I am proud to be part of Children’s and because of Children’s connection with the Miracles of Mitch Foundation, our lives have been brightened in this dark journey,” Nelson said.

School is in session

This is a post by Amy Moeller. Amy is a therapist who has worked with children and adolescents for 25 years. She works in the Adolescent Health Department at Children’s Hospitals and Clinics of Minnesota and treats teenagers experiencing depression, anxiety, social struggles and chemical dependency. In addition, Amy co-founded The Family Enhancement Center in south Minneapolis 17 years ago. She works at the center part time with children and families who have been affected by physical abuse, sexual abuse and neglect. Amy is married and the mother of three children. 

It’s that time of year again. It’s time for your teen to go back to school and juggle activities, homework and sleep.

As a therapist who works with teens, I know sleep and homework can present significant challenges. Between pressures of being involved in sports and other activities and being social, sometimes sleep and academic work take a backseat.

We all know that sleep is critical for kids. But did you know that the average teen needs around nine-and-a-half hours of sleep each night, according to the American Sleep Disorders Association? Studies show teens generally get fewer than seven-and-a-half hours of sleep.

From the moment their alarm sounds, teens go, go, go. But here are some ways you can help your teen catch more z’s and stay on top of school work.

Sleep

  • On a school night, set a time for lights out. While this is tough during the school year with activities, it’s better to set a time at the beginning than a mid-year change. Also, lights out means all electronics should be stowed away.
  • Establish a reasonable time to go to bed and wake up.
  • Help your teen develop a night-time routine that helps him/her slow down. Reducing commotion for an hour before bedtime will help your teen relax.
  • Cut caffeine consumption and encourage daily exercise more than two hours before bedtime.

Homework

  • Create an environment geared toward your teen. Some teens need privacy and quiet; others prefer to be around people. Find space in your where your teen is most comfortable. Have the tools they need to get the work done.
  • Pick a time for homework and stick to it. Routine makes your teen feel safe and secure. When they feel safe and secure, they’re at their best. Be available to help if your teen needs it.
  • Don’t let them get overwhelmed. When kids enter high school, they have a platter of activities from which to choose. Some teens want to do it all. This is a good opportunity to talk about “too much of a good thing.” See how they handle the responsibility of one activity before allowing them to take on another.
  • Get on top of a situation before it becomes a problem. During the first week, meet with your teen’s teachers or attend open houses to talk about expectations for your teen and your teen’s goals. This will send a message to your teen and the teachers that you care about your child’s education.
  • Keep your sanity. I know it’s easier said than done. Parents of teenagers often have trouble distinguishing between when to step in and help and when to back off. The grades they earn are their responsibility. We give them the space and the tools, and they need to do the learning. This doesn’t mean we ignore grades or stop caring. It means we push our teen toward taking the responsibility they need to become a successful adult.

Here’s to a well-balanced school year! Good luck, parents!

What advice do you have for other parents to prepare for the upcoming school year?

 

 

 

Making a safety list and checking it twice

This is a post by Dr. Rod Tarrago, a pediatric intensive care physician at Children’s Hospitals and Clinics of Minnesota.  He is also the Chief Medical Information Officer and is proud to admit he’s a computer geek.  He’s been helping improve the care at Children’s through the use of technology and spends most of his time helping other clinicians improve their understanding of the computer system. He’s the proud father of two young boys and future computer geeks. 

For nearly three years, the Pediatric Intensive Care Unit (PICU) at Children’s has been using a time-tested technique to improve care of patients: a safety checklist. It’s well known that it’s very difficult — if not impossible — for the human brain to truly multitask.

Unfortunately, in an ICU environment, where patients are sick and their illnesses complex, clinicians have to integrate a lot of information and make many decisions on a daily basis. There are also many “typical” tasks that need to be accomplished for every patient, every day.

In order to help the team remember to address all of these items, we’ve been using a safety checklist as part of our work since 2010.  In St. Paul, we go through this checklist during patient rounds.  In Minneapolis, since the unit is larger and busier, we do special “Safety Rounds” later in the workday.

On both campuses, the entire care team, including physicians, nurses, pharmacists, respiratory therapists, and nutritionists, comes together every day to go through the “standard list” of 23 safety items. These include reminders to check the need for IV and bladder catheters, make sure that antibiotics are needed, and order new labs each day. Each clinician specialty “owns” individual items and then brings them to the group for daily discussion, making sure that everyone is on the same page. Initially, we started this project by using a laminated paper checklist that was placed at each bedside. After losing too many checklists, we moved to an electronic checklist that is embedded in each child’s electronic medical record or EMR.

We recently examined 21 months’ worth of data after using the checklists and found some exciting results:

  • By asking whether we really needed catheters, we reduced the use of these catheters by anywhere from 25 to 45 percent. We also found that we used those catheters less.
  • By asking ourselves whether any medications can be given either orally or through a feeding tube instead of through an IV, we cut costs to families. We examined one medication, a diuretic, and found that by using the checklist, we used an IV 46 percent of the time instead of 77 percent of the time.  By using IV catheters less often, we reduce the risk of catheter infections. It’s also less expensive to give a medication orally compared to through the IV.  We saved patients’ families more than $64,000 over the study period by making these changes.
  • By simply discussing the need for antibiotics each day making sure that we identified ahead of time how long the antibiotics should last, we lowered our use of antibiotics.  In fact, by entering this information into the patient’s EMR, we found that we gave one less dose per patient each day.
  • Prior to the checklist, we ordered labs several days in advance. Now, the checklist reminds us to order them each day and discuss the need for each lab.  By doing this,  we reduced the number of labs we ordered by almost six labs per patient per day. This saves a family $500 a day in lab charges.

You may use a checklist at home or to run errands. In medicine, it’s a relatively new concept that’s only beginning to grow in popularity. But in our PICU, it’s the standard.

 

 

After rescue, Children’s nurse encourages water safety education

Leah Mickschl

At Children’s Hospitals and Clinics of Minnesota, we encounter life-and-death situations every day.

Earlier this summer, Leah Mickschl, a Children’s RN, experienced a crisis outside our walls. She was at a private neighborhood pool in Lakeville when a 4-year-old boy was discovered at the bottom of the pool.

She was in the right place at the right time.

Mickschl, who works at Midwest Children’s Resource Center, called upon her training and performed CPR on the boy. He had been under water for approximately two minutes, she said. But within seconds of having CPR performed on him, he sputtered water and regained consciousness. The boy recovered, and today, he’s active and healthy.

In July, the Lakeville City Council honored Mickschl for her life-saving efforts. She appreciates the honor and wants to use it as an opportunity to remind people of aquatic safety.

On the day of the boy’s near-drowning, the pool was filled with people – children and adults, she said. No one saw him go under; Mickschl’s own children were only a few feet away.

Leah Mickschl with her family

“Drowning is silent. It’s not like in the movies where you’re thrashing about and calling for help,” Mickschl said.

Unfortunately, drowning is the leading cause of accidental death among children ages 1 to 4, according to the Centers for Disease Control and Prevention. It remains the second leading cause of unintentional injury-related death behind motor vehicle crashes among children 1 to 14.

Mickschl encourages people to check out these water-safety tips from Children’s Dr. Manu Madhok before they head to the pool or lake. She also suggests getting CPR-certified.

“Prevention should always be the goal, but you never know when those skills might be needed,” she said.

Family Advocacy Day: A Q&A with the Johnstons

John, Nancy, Mike and Emma Johnston recently traveled to Washington, D.C., for Family Advocacy Day. In its eighth year, the Children’s Hospital Association 2012 Family Advocacy Day brings children’s hospitals patients and their families to tell their stories to lawmakers on Capitol Hill. In 2011, Mike, a Children’s patient, was diagnosed with a cancerous Germinoma tumor.

Upon his family’s return from a whirlwind tour of our nation’s capital, John answered a few questions about his family’s experience participating in Family Advocacy Day.

Mike, Emma, John and Nancy met Sen. Al Franken during Family Advocacy Day.

Q: Why did you share your story on Capitol Hill?

A: We shared our story because it was important for our legislators to put a face with a budget line item.  Our family does not want any other child to suffer waiting to receive care. We as a nation can’t afford to balance our budget on the backs of children.

Q: Do you think your story caught lawmakers’ attention?

A: Our story was very compelling. We had to wait for Mike to see a specialist for several months before we were ultimately told to go to Children’s.  Every legislator we spoke with agreed that this was unacceptable.  It is important for them to see the human impact of budget changes or cuts.

Q: What kind of reception did you get from the Minnesota delegation?

A: The Minnesota delegation was wonderful.  The four specific legislators we met with were; Reps. Betty McCollum and Eric Paulsen and Sens. Al Franken and Amy Klobuchar.  They were all up on the issues and understood our dilemma as parents.  They all agreed that this is an extremely important issue, and they vowed to keep up the fight.  The staffers we met also gave us ample time to share our story.  Rep. Paulsen commented on the trading card Mike gave him, so it was very important to leave something behind with our lawmakers.

Q: In addition to taking in the incredible sights of Washington, D.C., did you take anything away from your experience?

A: For our family, it was amazing to see how our government actually works.  It is very inspiring to know that a single family can make a difference in public policy. We’re a family that gives back to our community and have already offered our services at the state level.  We must stand up for children since they are our future. We know all too well the importance of excellent, timely care.  With any cuts to these programs, lives can be at risk.  We met so many wonderful people at Family Advocacy Day and would strongly urge others to do the same.  Our lives have been forever changed in a very positive way because of the role we were able to play.

John blogged before his family traveled to Washington, D.C. To read that post, click here