Monthly Archives: February 2013

Yesica’s story: Living with diabetes

Yesica

When Yesica started having to go to the bathroom frequently and was always drinking water, her family didn’t think anything was wrong.

Then, Yesica’s jeans stopped fitting.

“When I tried on some jeans, they fell right off,” said Yesica. “That’s something that’s not normal for my age. I should be gaining [weight], not losing.”

That’s when her mom took her to a doctor, and Yesica was ultimately referred to Children’s Hospitals and Clinics of Minnesota. Her symptoms were early signs of Type 1 Diabetes — a chronic disease in which there are high levels of sugar in the blood. While it’s often diagnosed in young children, it can be found at any life stage. One in 400 people under 20 years of age has diabetes, according to the American Diabetes Association.

“I had many questions. I was kind of nervous because I didn’t know what was going on and what I was supposed to do,” Yesica said. “It was a tough experience.”

The diagnosis has changed her life, and, most noticeably, her daily routine.

She injects insulin, which helps keep her blood sugar at a normal level, six times a day every day, said 11-year-old Yesica. She leaves class twice a day to see the school nurse and have her blood sugar checked. On days she’s not feeling well, she sees the nurse more often.

“It’s hard,” she said.

“Diabetes needs constant attention,” said Dr. Angela Tridgell, an endocrinologist at Children’s McNeely Pediatric Diabetes Center. “It’s something you can never take a vacation from.”

Those with Type 1 Diabetes often have to check blood sugar levels four to six times a day and take insulin four to six times a day, Tridgell said.

Children’s takes an aggressive and comprehensive approach to treating its patients, she said. They come in for at least four visits annually. The visit involves seeing a physician or nurse practitioner for a physical exam and analyzing blood sugar results to determine whether a change in insulin dosage is needed. A patient may also meet with a diabetes nurse educator, dietitian, psychologist or social worker – depending on needs.

“Our goal is to help a child be as normal as possible and be as healthy as possible,” Tridgell said.

Though the experience has been challenging for Yesica, she said she has found support by joining Children’s Youth Advisory Council where she can connect with other patients.

“I’ve learned that I should appreciate life and that I should stay strong no matter what,” Yesica said.

Five Question Friday: Kendall Munson

In our second installment of Five Question Friday — a feature every other Friday about the staff at Children’s Hospitals and Clinics of Minnesota — we introduce you to Kendall Munson, Family Resource Center coordinator. Munson has worked at Children’s for 31 years!

What do you do at the Family Resource Center? I provide system-wide coordination for the wide array of services available in the Family Resource Centers — including acquiring and cataloging materials for the consumer health and children’s libraries, assisting families with reference, resource and research questions, orienting staff and volunteers, teaming up with other departments and families to enhance, develop and promote services and also supporting Children’s fundraising efforts for patient/family-centered care initiatives.

You have worked at Children’s for 31 years. What keeps you here year after year? The shared sense of purpose and community among people who work at Children’s, as well as the resilience and courage of the patients and families we care for. Several years ago, I took a one-year “sabbatical” from Children’s. And, during that time, I quickly realized how much I missed the passion and dedication that staff and volunteers bring to their work here. It’s an ongoing source of inspiration!

Kendall Munson

What is your favorite memory from working at Children’s? In the late 80′s, I was invited to be a staff representative on the first Family Advisory Council. It was an honor and a privilege to be part of this pioneering group who saw the need to have a quiet, comfortable, library-type space for parents and adult family members of patients. They knew firsthand that having playrooms and a children’s library made a big difference in how patients coped with the hospital experience. And, they wanted to create something that addressed the needs of parents, as well.

Funding and lack of space were both obstacles that had to be overcome. But, thanks to the vision and determination of that Family Advisory Council, the first Family Resources “office” eventually opened in a small area that had at one time been an elevator landing. Twelve years later, through the continued perseverance of families who carried on the work of that first Council, the dream was fully realized when the Family Resource Center as we know it today opened in 1998.

And, I am enormously grateful for the opportunity I’ve had to be part of the Family Resource Center for the past 15 years. A lot of great memories have been created since the humble beginnings in that converted elevator landing!

What have you learned from families? I’ve learned how important it is to take life day by day and sometimes moment by moment. And, regardless of the circumstances, to find some element of joy and gratitude each day. I’ll never forget the mom who told me in a very heartfelt way how much she enjoyed and appreciated coming to the Family Resource Center for a daily cup of instant hot chocolate during her child’s two-and-a-half-month hospital stay. Families have shown me that little things can and do make a big difference here at Children’s.

What is your favorite Starz Café meal? Freshly grilled chicken breast with a Caesar salad.

 

Easy Chicken with Mushrooms

Today, we’re serving up Easy Chicken with Mushrooms from Andrew Zimmern. We love this recipe because chicken is a budget-friendly source of high-quality protein that’s low in saturated fat. Reducing saturated fat in your diet can help prevent heart disease. If you serve this dish with quinoa, even better. It’s a gluten-free grain that’s also rich in protein, containing all nine essential amino acids. It’s also an excellent source of fiber, providing double the amount compared to other grains. — The clinical nutrition team at Children’s Hospitals and Clinics of Minnesota. 

Easy Chicken with Mushrooms

Serve this simple dish with sauteed spinach seasoned with garlic and a healthy grain like quinoa.

Total Time: 30 min

Serves 6

Ingredients

4 boneless chicken breasts, each weighing 6-7 ounces, lightly pounded and halved

1 cup flour seasoned with salt and pepper

12 ounces thinly sliced Cremini mushrooms

2 chopped shallots

1 sprig fresh rosemary

1 1/2 cup homemade chicken stock

2T canola oil

Instructions

Place the oil in a large skillet (14 inches) over medium high heat.

Dredge the chicken in the flour and knock loose any excess.

Brown one side of the chicken (about 4-5 minutes), flip and brown the other side (about 3 minutes). Reserve chicken to a plate.

Add the mushrooms, rosemary and shallots to the pan. Once browned, add the stock.

Bring liquids to a boil, then simmer on low. Add the chicken back to the pan, cooking the liquids down around the chicken to a tight sauce. This will take roughly 10-15 minutes.

Season and serve.

 

Where the heart is

Mindy, several months pregnant with her second child, wore a used, silver bangle bracelet a stranger had given her: “With God all things are possible – Matthew 19:26.” Even though she instinctively knew something was terribly wrong with her pregnancy, she was sure her unborn child would be okay. She would have bet her life on it, she said.

She would soon learn that she was right – about everything. Something was wrong. Charlie had a complex congenital heart defect. Specifically, he had transposition of the great arteries. Dr. Amarjit Singh, a now retired pediatric cardiologist at The Children’s Heart Clinic at Children’s Hospitals and Clinics of Minnesota, diagnosed Charlie after a series of ultrasounds and wrong answers from other doctors. Mindy was right about something else, too. In the end, everything would turn out okay with her son.

Baby Charlie, hospitalized at Children's, with mom, Mindy, looking on

Charlie was born in 2005 at Abbott Northwestern Hospital. Immediately after entering this world, he was rushed through a quarter-mile underground tunnel to Children’s. His oxygen levels were dangerously low. Once at Children’s he immediately had an emergency surgical procedure known as a septostomy. A septostomy creates a hole between the heart’s chambers and allows for oxygen rich blood to mix within the heart, thus allowing oxygen to reach the body.

Following the septostomy, it was discovered that Charlie had a stroke. It’s unclear when it occurred – either during resuscitation following his birth, or during the septostomy, Mindy said. In the following days, he worked to recover from the traumatic events on the day of his birth. Eventually he became stable enough to undergo a complex lifesaving open-heart surgery.

Mindy has recorded this story for a book, “Embracing Charlie.” It’s a story about love, strength and faith. The love she and her husband shared as they built a family. The strength they showed when they learned their son had a heart defect. But mostly, the story is about Mindy’s faith despite the challenges she faced.

She is honest, giving outsiders a peek into her world as she and her husband, Paul, searched for answers and, when they got them, how they prepared for a son with a heart defect.

Mindy, who spent three years off and on writing, said she was inspired by a connection she made with a Boston family whose son also had transposition of the great arteries. As she prepared for Charlie’s birth, the family sent Mindy a photo of the boy. That photo gave her more reassurance than any doctor could, she said.

“When I first started thinking about writing, I wanted to be that to somebody else,” she said. “[The photo] gave me a sense of hope, to see what our life could still look like.”

Paul, Mindy, Charlie and Sophie

After several weeks in the hospital recovering from open-heart surgery, Charlie went home. Developmental milestones were delayed. He received speech, occupational, and physical therapies to address his challenges from the stroke and made great progress, Mindy said. For a long time, he favored his right side. Today, he’s right-hand dominant, and you would be hard pressed to notice that anything had ever happened to him.

He continues to have follow-up visits with a neurologist. He also goes to the Heart Clinic for regular check-ups. Future surgeries are possible. “He may need something, but in the scheme of heart surgeries, he’s been through the worst of it,” she said.

Mindy has “absurd gratitude” for her son’s care team, which included surgeons Dr. Francis Moga and Dr. David Overman. And she’s grateful for Dr. Singh for his incredible commitment to his patients and for giving her answers when others couldn’t.

“As a pediatric cardiologist, one of the joys of our job is that we get to see the babies with very complex health issues grow up into wonderful young people who still love us in spite of the pain and discomfort that we may have put them through,” said Dr. Singh. “The other is that we meet some incredible families. Charlie and his parents are one such family. I was very fortunate to care for Charlie and to know his parents. They are extraordinary people. It was my privilege to see him grow up to be happy loving child.”

Dr. Singh and Charlie

Charlie, 7, is delightful, Mindy said. He is an extrovert in an “oddly mature way.” He’s obsessed with artists Claude Monet and Vincent van Gogh.

“It’s like there’s an old man trapped in there,” she said.

Mindy often thinks back on the day she received the bracelet from a stranger and the faith that came with it. That day, she had prayed for a sign that everything would be okay.

She was working at a dental clinic when a colleague approached her with the bracelet. A patient had given it to Mindy’s colleague after she asked where she had gotten it because she wanted to get something similar for Mindy. The patient removed the bracelet and urged the colleague to give it to Mindy.

“I asked Jesus to show himself to me, and he responded, with jewelry,” she said.

She no longer wears the bracelet. She gave it to another mother of a newborn cardiac patient while Charlie was at Children’s.

Charlie

The experience of her son’s heart defect has taught Mindy to “embrace the darkness and troubles.” There’s growth in that, she said.

“It changed our lives for better. I couldn’t have seen that at the beginning,” Mindy said. “It gave the gift of perspective.”

To read the first chapter of Mindy’s book, check out her blog.

Five Question Friday: Dr. Robert Segal

We’re kicking off a new series, Five Question Friday, a feature every other Friday about the staff at Children’s Hospitals and Clinics of Minnesota. Today, we introduce you to Dr. Robert Segal, chief of staff and medical director of the medical/surgical inpatient units on the Minneapolis campus. He has worked at Children’s for 22 years.

Why did you go into pediatric healthcare? I went into pediatrics because it seemed like a great way to blend my fascination with child development, my love of science, and my interest in toy cars and Crayola crayons.

What have you learned from the kids you’ve worked with? I’ve learned many things — to watch and listen mindfully and to understand the remarkable resilience of children and families.

What is your favorite memory from working at Children’s? I don’t have a favorite memory; there as so many.  Every day here at Children’s the children make me smile, and sometimes cry.

What do you love most about working at Children’s? The remarkable community of people I work with.  The ever present focus on combining the experience of children and families in our hospital, with a singular focus on safe and quality care.

What do you hope to accomplish as chief of staff? To share with hospital administration the professional staff’s perspective on the issues that affect our ability to provide the highest quality clinical care and to help oversee the professional staff’s responsibility to provide that care.

 

A heart mom is born

By Elin Neugebauer

Elin and Maija

Maija Jean was born on July 2, 2009, after an induction at 40 weeks and 3 days. She weighed 8 pounds, 4 ounces and scored an eight and nine on the Apgar test. It felt like a textbook pregnancy, labor, and delivery with a little Pitocin thrown in. After Maija’s birth I was filled with immense joy and love. Maija made me a mom. From that point forward, I would be a protector, a teacher and a friend.

A nurse took her measurements, weighed her and stamped her feet. I hear a murmur. Usually it is nothing. Don’t worry.

Our first night went smoothly. Bright and early the next morning, her pediatrician checked on her. I hear a murmur. Usually it is nothing, don’t worry. I’m going to schedule a heart ECHO just to make sure.

When the pediatric cardiologist came knocking on the door, I became concerned. This was no longer a textbook birth. I hear a murmur. Usually it is nothing, don’t worry. I am going to have your daughter admitted to the Neonatal Intensive Care Unit (NICU) just to be sure. We’ll run another ECHO in the morning.

After the cardiologist left, I was discharged and my daughter was taken to the NICU. My saving grace was the graciousness the staff blessed upon me by letting me stay one more night as an “invisible patient.” The next morning after the ECHO we were sent home, together. Her discharge included strict instructions to come into the cardiologist’s office first thing in the morning for another ECHO. But I didn’t worry at the time. These things were usually nothing.

I could never have imagined experiencing the kind of emotional pain I felt just four days after giving birth. Numb from the waist down, bursting with love from the waist up. I had just given birth to my daughter. It was the most beautiful and intense moment of my life. I held her close and whispered my love and admiration for her. What I did not know upon the doctor placing her in my arms was that I also became a heart mom.

The murmur was pulmonary valve stenosis. Her lungs weren’t getting enough blood, and she needed surgery. That is when my whole world shifted.

Before Maija’s birth I had no idea she had a Congenital Heart Defect (CHD). Ultrasounds didn’t detect pulmonary valve stenosis, atrial septal defect or right ventricular hypertrophy.

I had skipped the chapters in pregnancy and baby books that covered any type of special need. After her diagnosis, my life changed. I became a stay-at-home mom armed with anti-bacterial lotion, wipes and sprays. Maija sat in a plush cart cover at the store. The job as protector took on a much greater meaning than I was expecting. I quickly became one of those helicopter moms.

Maija

Now, three-and-a-half years later, I am a proud heart mom. And the leash is a little bit looser. Maija is in preschool while I work outside the home, and she enjoys ballet classes throughout the week. We no longer use a cart cover.

Though her surgery at 5 days old to fix the restricted valve was a success, she now has significant pulmonary valve regurgitation. The flow of blood through her valve leaks back into her heart. A similar flow takes place in the hole between her atria. The right ventricular hypertrophy is still a concern. She will need surgery again someday, and even though I will hopefully know in advance, I’m still scared. The idea of your baby, no matter their age, going under anesthesia and having heart surgery is terrifying.

Congenital heart defects affect tens of thousands of babies every year. They are the most common birth defect. As a heart mom, I have a responsibility to share my story – my daughter’s story – with others. She participates in fundraising and awareness events with me, and I am endlessly reading and sharing news with my family and friends. As we enter Congenital Heart Defect Awareness Week, I encourage others to share their stories as well. We can all help our heart babies, young and old, together.

On July 7, 2009, I handed over my baby to the surgeons. It was the single most terrifying moment I have experienced. Her life, and my heart, were in their hands.  We now celebrate our Heart Day every year on July 7. We celebrate her life and her heart. A beautiful beating heart with a special extra whoosh to it.

Maija, 3, takes ballet lessons

Elin

 

Elin Neugebauer is a heart mom to 3-year-old Maija Jean. Elin works at Children’s Hospitals and Clinics of Minnesota as a Health Unit Coordinator and is actively engaged with the community on Twitter. Follow her here

New payment model values quality over quantity

At Children’s Hospitals and Clinics of Minnesota, we pride ourselves in getting the best outcomes for our patients. That includes keeping patients healthy so they don’t require extra visits and expensive procedures.

We have a long-standing commitment to innovative care delivery, which triggered our willingness to partner with the Minnesota Department of Human Services to test a new delivery and payment model aimed at better health outcomes and lower costs for our state’s Medicaid program. The shift in approach is to tie payment to delivering higher quality outcomes rather than relying on the historic model of publicly-funded health care programs in Minnesota where health care providers were paid for the procedure.

By participating in this new payment model, our job at Children’s will be to manage the care of 14,000 patients. Rather than a system that creates an incentive for more visits and procedures, the total cost of the care model creates an incentive for us to advance methods that keep people healthy so they don’t have to use expensive services.

The cool news is that we’ve already been doing this for nearly a decade. Children’s established the state’s first Medical Home in 2004 and this care coordination model has resulted in reduced hospitalization and fewer readmissions, among other outcomes.

“With nearly a decade of experience to draw on, Children’s is pleased to partner with the state on an approach that financially rewards better health outcomes,” said Maria Christu, General Counsel and Vice President of Advoacy and Policy at Children’s. “We are confident we’ll deliver on the quality outcomes the state and, more importantly, our patients expect.”

Children’s joins five other major health care providers. They include Essentia Health, CentraCare Health System, North Memorial Health Care, Federally Qualified Health Center Urban Health Network (FUHN) and Northwest Metro Alliance (a partnership between Allina Health System and HealthPartners). In all, we’ll be responsible for 100,000 Minnesotans enrolled in publicly-funded programs.

Minnesota is the first state in the country to implement this new payment model. “This new payment system will deliver better health care at a better price. By changing the way we pay health care providers we can incentivize reform, help Minnesotans live healthier lives, and slow the rising cost of health care in our state,” Gov. Mark Dayton said in a statement.

This model is being implemented at the same time as Minnesota’s Medicaid population is expected to increase. Gov. Dayton’s budget proposal, which we wrote about last week, includes expanding Medical Assistance to 145,000 more Minnesotans, including 47,000 kids.