Author Archives: ChildrensMN

Wisconsin boy overcomes tumor inside heart

Doctors discovered a tumor inside the heart of Cole Eckes, 4, of Hayward, Wis., when he was an infant. (Photos courtesy of Kylah Eckes)

Doctors discovered a tumor inside the heart of Cole Eckes, 4, of Hayward, Wis., when he was an infant. (Photos courtesy of Kylah Eckes)

Kylah Eckes

Three-year-old Tara was excited to become a big sister. Cole was perfect when he was born; he had beautiful skin, bright eyes, and long fingers and toes.

He was perfect.

Little did we know, there was something imperfect about our baby boy.

When Cole was 12 weeks old, he had a funky cough, so I brought him to Essentia Health-Hayward (Wis.) Clinic to see our family physician. After reviewing the symptoms, our doctor ordered a chest X-ray to determine the problem. Of course, I cringed at the thought of my baby having pneumonia. Cole also had mild pectus excavatum — a sunken-in chest — so an X-ray would help monitor, too.

As I left the clinic, I told the receptionist that I was worried about pneumonia. In hindsight, we would have given anything for the diagnosis to have been pneumonia.

We spent most of the next 12 days at Children’s – Minneapolis, meeting people with titles we didn’t know existed. We waited for an official diagnosis and to meet someone who knew what to do. Cole underwent all kinds of tests, imaging and exams. Ultimately, the diagnosis was cardiac fibroma, a rare tumor of the heart. One day during morning rounds, we heard one of the cardiologists tell the other specialists that the main potential side effect of the mass is “sudden death.” Those words still ring loudly in my ear. Cole is only the 21st living case of this type of tumor, so there wasn’t much data to help lead the specialists. The surgeons didn’t want to perform surgery to remove the mass because of its large size — same size as his heart — and location — inside the back wall of the left ventricle. Surgery was too risky, and the tumor wasn’t impeding on the functions of the heart, so we just had to “keep an eye on it.”

Cole had surgery Feb. 8, 2011.

Cole had heart surgery Feb. 8, 2011.

At Children’s – Minneapolis, my husband, Zac, and I learned infant CPR and how to use an automated external defibrillator (AED). We received two AEDs but were terrified to bring Cole home, an uncomfortable three hours away.

Over the next five months, every nap that lasted a bit longer than normal sent my mind racing; I was scared to go in and check on Cole. During that period, we gave Cole antiarrhythmic medication every six hours and saw his electrophysiologist, Dr. Chris Carter, regularly.

On Dec. 26, 2010, when Cole was 7 months old, he experienced ventricular fibrillation, a rapid heartbeat, at home. Zac administered CPR and used our AED to put Cole’s heart back into normal rhythm. Cole was flown to Children’s that night.

He went into v-fib, again, four days later.

“Dr. Blue, fourth floor, CVCC,” the voice over the intercom said.

That was a call for our son. The staff at Children’s seemed to come out of everywhere, flooding Cole’s room with the best team for which parents could ask. Zac and I stood in the hall as they worked on Cole for 55 minutes. One of the intensivists informed us that it was time for us to make a decision: ECMO (extracorporeal membrane oxygenation), a type of life support; or end resuscitation. No one knew how Cole would respond to ECMO. There was no guarantee Cole would survive, and, if he did, everyone was unsure about the status of his cognitive functions. We couldn’t give up on him, so we chose ECMO.

For four days, Zac and I watched the staff care for Cole. All we could do was kiss his cold forehead and hold his cold little hand. Cole slowly was weaned off of ECMO, although it was discovered that he suffered numerous strokes and bleeding in the brain.

It was obvious that something needed to be done about the tumor. Surgery was scheduled for Feb. 8, 2011, Tara’s fourth birthday.

Life was an absolute roller coaster, but one thing remained constant: the care Cole received from the staff at Children’s. These people became like family to us. We trusted them to care for our son, and they did so with evident care and dedication. They were with us for the highest of highs and the lowest of lows. They stood by our sides when we looked at Cole lying in his hospital bed. We truly felt Cole was in the best hands when we went to the Ronald McDonald House, one floor below Cole’s bed, every morning for breakfast. This is where we spent time with Tara when she came to visit us with other family members.

I remember numerous conversations with doctors that put my mind at ease. I sat for nearly two hours on Cole’s couch, talking to one of the intensivists. She was able to help me understand what was happening.

Kylah and Zac Eckes with children Cole and Tara

Kylah and Zac Eckes with children Cole and Tara

On the morning of Cole’s surgery, we said goodbye to him because no one knew if he would survive surgery. Would his heart be able to function without the tumor? A large group of family members sat with us in the waiting room for eight hours. We received periodic updates from staff we had gotten to know well.

Dr. David Overman walked down the hall a little past 6 p.m. to deliver the most amazing news we could have heard: Cole made it through surgery. Not only did he survive, but he didn’t need the help of ECMO, which was a possibility had he made it through surgery.

Although surgery was over and the tumor removal was successfully, Cole wasn’t out of the woods. The next 12 hours were critical. Nurses spent the night stripping Cole’s tubes to make sure there were no blood clots; their dedication was remarkable. They weren’t just doing their jobs; they were helping a baby they cared about.

We were on our way home 10 days later. Walking out of the doors to the cardiovascular care center was bittersweet. We said goodbye to people who came to mean a great deal to us and thanked them over and over for all of the amazing things they did for Cole and our family even though “thank you” wasn’t nearly big enough to show our appreciation.

Today, Cole is 4 and in preschool, getting ready for kindergarten in the fall. He continues to beat the odds. He has fun playing with Tara and his little sister, Ayda. He loves to golf and is looking forward to start logrolling this summer. He still has an internal cardiac defibrillator (ICD) that was placed during the early part of his stay at Children’s. The ICD continuously monitors his heart rhythms and would deliver a shock if his heart were to have another episode, but we’re hopeful and optimistic that Cole will never need that type of intervention again.

Cole

From left: Siblings Tara, Ayda and Cole Eckes

subscribe_blogTara, now 8, participates in Jump Rope For Heart at her school. The annual event raises money for the American Heart Association. She raised more than $2,500 at last year’s event. She tells people about the importance of helping others and paying it forward because so many people helped us when we needed it. Her dedication to helping others landed her on the cover of Time For Kids magazine.

Cole sees his team at Children’s Heart Clinic every six months for checkups. We look forward to these visits to hear good news and to show everyone how far Cole has come. We repeatedly have heard from various staff members that Cole is a reminder to them of why they do what they do.

What you may not know about eating disorders

You may think you know a lot about eating disorders — that they’re caused by the social pressure to look like models, or that they’re all about weight loss and excessive exercise — but there’s more than meets the eye when it comes to identifying and treating these serious conditions.

In recognition of National Eating Disorder Awareness Week, our team from Children’s Center for the Treatment of Eating Disorders clears up some common misconceptions about anorexia nervosa, bulimia nervosa and binge-eating disorder as well as provides signs that may indicate that your child or teen is suffering from an eating disorder.

Full recovery can take months or years but is possible. Many individuals go on to be free from their eating disorder, while others may have residual symptoms or remain at risk for relapse. (iStock photo / Getty Images)

Myth No. 1: People choose to have this illness.

Eating disorders develop as a result of complex genetic, psychological, social or environmental factors. They’re serious and potentially life threatening, and serious physiological (e.g., cardiac arrhythmias, kidney failure, death) and psychiatric (e.g., depression, substance abuse, suicidality) costs can accrue. In fact, among mental health diagnoses, eating disorders have the highest mortality rate. Someone doesn’t choose to have an eating disorder, just as people don’t choose to have cancer.

Myth No. 2: Eating disorders are caused by families.

Families do NOT cause eating disorders. This is a common myth that must be emphasized. There is no evidence showing that parenting styles or family dynamics play a role in the onset of eating disorders. Eating disorders can affect anyone.

Myth No. 3: Eating disorders are all about food.

Extreme or unhealthy dieting behaviors are associated with eating disorders, but eating disorders simply are not about food or controlling eating. In fact, people with eating disorders may either have a false sense of or complete loss of control over their eating. The core features of eating disorders are theorized to be the over-evaluation of weight and shape.

Myth No. 4: Only females are affected by eating disorders.

Eating disorders can affect anyone, males or females, across all cultural and socioeconomic backgrounds, and among all age groups ranging from young children to the elderly. However, eating disorders predominantly target females and typically strike during adolescence and young adulthood.

Myth No. 5: You have to be thin to have an eating disorder.

It is impossible to know whether a person has an eating disorder just by looking at him or her, as people with eating disorders can appear thin, normal weight or overweight. Regardless of how a person appears or how much a person weighs, he or she might have an eating disorder and be engaging in harmful eating disorder behaviors.

Myth No. 6: People with an eating disorder can change but choose not to.

Although people with eating disorders may resist treatment or push family or friends away if they try to help, this is just a symptom of his or her illness. They also cannot choose to “just eat.” Eating disorders are serious mental illnesses that require professional treatment. The sooner a person with an eating disorder gets help, the better his or her chances are of recovering. Fortunately, we have effective therapies to treat eating disorders. At Children’s Center for the Treatment of Eating Disorders, our clinicians are trained and have experience in delivery of these evidence-based treatments.

Myth No. 7: Once someone is treated for an eating disorder, he or she is cured for life.

Full recovery can take months or years but is possible. Many individuals go on to be free from their eating disorder, while others may have residual symptoms or remain at risk for relapse.

How to recognize an eating disorder

As illustrated above, eating disorders are complex. They may begin with a well-intended attempt to “get healthy” or “eat healthier.” Eating disorders also may look different for each child or adolescent. Some of the following may be warning signs that your child or adolescent is developing or has developed an eating disorder.

subscribe_blogPhysical signs:

  • Rapid or excessive weight loss
  • Dramatic weight gain
  • Development of fine facial or body hair
  • Lack of energy
  • Dizziness or fainting
  • Feeling or complaining of being cold
  • Constipation
  • Vomiting
  • Dry skin
  • Hair loss
  • Dental erosion
  • Calluses on knuckles from self-induced vomiting
  • Decreased heart rate
  • Absent or irregular menstruation in females

 Cognitive signs:

  • Belief that he or she is “fat”
  • Afraid of gaining weight or becoming fat
  • Afraid of being able to stop eating
  • Denies having a problem or an eating disorder
  • Obsesses about body image, appearance or clothing
  • Difficulty concentrating
  • Depression or withdrawal
  • Irritability
  • Self-worth appears strongly related to weight or shape
  • Obsessiveness 

Behavioral signs:

  • Refuses to eat normal types or amounts of food
  • Eats large amounts of food in a short period of time (binge-eating)
  • Self-induces vomiting
  • Over-exercising
  • Takes laxatives or diet pills
  • Hoarding, hiding or throwing away food
  • Engages in food rituals or has food rules, including calorie limits, measuring food or rules about what he or she should or shouldn’t eat
  • Categorizes food into “good” and “bad”
  • Refuses to eat “unhealthy” or “bad” foods
  • Eats only certain foods or only eats at specified times
  • Often says “I’m not hungry”
  • Makes excuses to avoid eating at mealtimes
  • Withdrawal from friends or activities
  • Eating in secret so that you are not aware of what he or she is eating

If you suspect that your child has an eating disorder or you have noticed some of these symptoms, it’s important to seek professional help as soon as possible. Trust your instincts as parents. Don’t wait until things get worse.

We encourage you to educate yourself and ask questions. We also encourage you to contact the Center for the Treatment of Eating Disorders at Children’s to schedule an appointment for your child to have a thorough evaluation and to explore treatment options. Contact us at (612) 813-7179.

Preparing yourself for your child’s surgery

Visiting the hospital ahead of time gives everyone a chance to learn more about what to expect and what’s helpful to do ahead of time or bring with you when you come to the hospital. (2013 file photo)

Jeri Kayser

When a child needs surgery, the focus of preparation usually is with the child.

That makes sense.

We want our kids to understand what’s about to happen so they aren’t overwhelmed or traumatized by the event. They’re kids, after all, and we adults have to deal with it, right? Or, perhaps, wrong.

After more than 30 years as a child life specialist, 20 of those in surgery, I have observed that the first person to be well-prepared should be the parent. Children respond most directly to how their parents are reacting emotionally to the event to gauge their own response.

Imagine you are 3 years old and about to get your tonsils out. This is scary because it’s hard to understand what’s about to happen and frustrating you can’t control it. Age-appropriate information and a supportive staff are helpful, but if you notice your mom or dad is anxious, nothing else matters. You got the message: You should be anxious, too, especially if your parents are trying to suppress their emotions – that is even scarier to a child. You can tell that they are upset, but you don’t know why, so you imagine the worst. If you’re a teenager, you might pick up on the message that we don’t talk about this and it will upset your mom if you bring it up to her. It’s hard to deal with the unspoken stress of your family as well as your own fears and concerns.

When I’ve observed kids coping successfully with the challenges of a health care experience, I have noticed that their families have prepared themselves with some or all of the following techniques:

Seek information

Find out what is happening and why. What are the expected outcomes?  What types of things can you as a family plan on doing to foster your child’s healing?

Attend a pre-admission tour

On our hospital’s website there is helpful information about surgery and how to sign up for a tour. Visiting the hospital ahead of time gives everyone a chance to learn more about what to expect and what’s helpful to do ahead of time or bring with you when you come to the hospital.

Make a list

Write down a list of questions to bring to meetings with health care providers. I remember one family kept an ongoing list in their kitchen for anyone to write down questions, and they all contributed, even the siblings. Everyone had a say, and the questions helped everyone feel a part of the event. Knowledge helps you be in control and having specific tasks you can do to support your child in his or her recovery provides focus and direction.

subscribe_blogBe honest with your emotions

As a parent, our job is to love and protect our kids and guide them towards being an independent adult. It can be overwhelming to have to make decisions for your child that includes any potential discomfort since we so desperately want to keep him or her safe from life’s struggles, but learning to deal with life’s struggles is what helps kids learn to be independent. We also carry with us our own memories and experiences with health care that may help or cloud our emotional response to our child’s experience. It helps to pay attention to where your emotions about surgery differ from your child’s. You each get to own your own perspective.

Kids do best when we are honest with them. When you label your emotions and show your child what you’re doing to help yourself, your child gets to experience some phenomenal role modeling on how to cope with challenging situations.

“I am sad that your tonsils need to come out, but I am glad that the doctors can fix this and soon you will be able to breathe better at night when you’re sleeping,” a parent can say. “Let’s think of some fun things to do while you are healing!”

Take care of yourself

You know yourself best. Helping your child through the experience of surgery can be exhausting. Think about what will help you be in your best place. Whom can you call on for support? Even small favors like having someone else pick up your other kids from school can be a great stress reducer.

Plan on something nice you can do for yourself while waiting for your child’s surgery to be done or when you get home. This also can help you and your child focus forward and be reminded of the time-limiting nature of the experience. It won’t last forever, and soon you’ll be looking back on this adventure.

Cut yourself some slack. There is no perfect person, so there can be no perfect parent. Your effort is what your child will notice and appreciate.

We grow as individuals and we grow as a family when we figure out what works best for us to deal with life’s challenges. This knowledge is precious and affirming and gives us all the more strength to deal with the next adventure.

Jeri Kayser is a child life specialist at Children’s Hospitals and Clinics of Minnesota.

Children’s care shared with worldwide audience

Buildings can be seen just beyond the marina in Dubai. (Photos by Jill Bauer)

Buildings can be seen just beyond the marina in Dubai. (Photo by Jill Bauer)

Jill Bauer, MA

Recently, I was asked to represent Children’s Hospitals and Clinics of Minnesota at the four-day Arab Health Exhibition & Congress in Dubai. The invitation came from Children’s leadership and Minnesota International Medicine (MIM).

Jill Bauer stands with the spire Burj Khalifa in the background.

Jill Bauer stands with the spire Burj Khalifa in the background.

As Children’s neonatal outreach nurse for the past nine years, my role has been to network with hospital leaders and educators in our region to strengthen relationships and offer our resources, services and expertise to promote best-care practices. My role in Dubai was similar, but on a larger, international scale.

After about 20 hours of air and ground travel, I arrived in Dubai late evening Jan. 24. During the taxi ride to my hotel, my first glimpses of the city were futuristic buildings that towered to the sky and gave me impressions at times of being thrown into a sort of sci-fi movie.

Known as a “wonder of the modern world,” Dubai is full of luxury and wealth but continues to have areas where traditional souks and desserts remain; these reminded me of its Arabian heritage. Although still primarily a Muslim city, it has become a multicultural, globalized business hub with many people speaking English and obvious signs of western culture everywhere.

Members of Minnesota International Medical

Members of Minnesota International Medical

On the first morning, our group — including representatives from MIM, University of Minnesota Medical Center, Regions Hospital, North Memorial Health Care and Noran Neurological Clinic — got up early to go to the Dubai International Convention & Exhibition Centre. Upon arrival at the convention center, we definitely were not alone. More than 100,000 attendees and vendors joined us from 151 countries. It took some time to reach our booth, which was positioned in the midst of 322 U.S. vendors, including Johns Hopkins, the Mayo Clinic and Boston Children’s Hospital, in an area the size of two football fields known as the “U.S. Pavilion.” That gave some perspective about the size of the remaining convention area that housed the additional 150 countries.

During the taxi ride to my hotel, my first glimpses of the city were futuristic buildings that towered to the sky and gave me impressions at times of being thrown into a sort of sci-fi movie.

During the taxi ride to my hotel, my first glimpses of the city were futuristic buildings that towered to the sky and gave me impressions at times of being thrown into a sort of sci-fi movie.

Throughout the convention, I spoke to vendors and attendees from all over the world about MIM and Children’s services and expertise. Our group’s work created various types of relationships, including one formed with a hospital in Abu Dhabi. Networking with their group resulted in a visit to their hospital on the final day of the convention. During the visit, I was asked to do an initial assessment of their nursery and make recommendations for advancing their level of care. After an interview with the CEO, chief nursing officer and nursery manager, as well as a quick nursery tour, I was able to summarize some initial recommendations for the types of resources needed to achieve their goal. MIM will use this summary to create a service proposal for them.

I am honored to have been invited to attend the convention. I have a sense of pride and passion about representing Children’s within our region and in international settings like Arab Health. Experiences like these emphasize to me how blessed we are to possess the level of expertise and technology at Children’s that allows us the ability to offer such a high standard of cutting-edge, quality, safe care to our patients each day.

Similar to outreach in our region, international gatherings like Arab Health offer opportunities to network with the goal of improving care internationally. This leaves me with hope that one day all will have access to the quality of care that we give to our patients and families daily.

Jill Bauer, MA, is neonatal outreach nurse at Children’s Hospitals and Clinics of Minnesota.

Five Question Friday: Meet one of Children’s geeks

five_question_friday111

Children’s is fortunate to have an incredible staff of technology experts from Best Buy’s Geek Squad Precinct inside its Minneapolis and St. Paul hospitals. One of those Geek Squaders is the multitalented Jake Beaver. Get to know Jake in this edition of Five Question Friday.

Outside of his work at Children's, Jake Beaver hosts and runs a number of podcasts/radio shows.

Outside of his work at Children’s, Jake Beaver hosts and runs a number of podcasts/radio shows.

What’s your role at the Geek Squad Precinct?

I work on getting the conference rooms set up for all types of meetings and conferences. I make sure that everything is functional with the technology in the room before the meeting starts. If there seems to be any issues with some of the meeting rooms, I am on hand to troubleshoot and make things work. I work on audio-video projects around the hospital such as the Squeezebox radios in the ORs, helping with PowerPoints for meetings, and answering general technology questions throughout the day.

How long have you worked at Children’s?

I started my role at Children’s in July 2012 and have loved every moment of it.

What does a typical day look like for you?

Most days I will have a schedule of meetings to attend. Depending on the meeting, some of them, I will set up and be on call to be able to run over to the room if there are issues, while other meetings I will be in attendance in full to help make the technology run smoothly. I am also in a support role for other technology around the meeting rooms if something breaks or needs to be adjusted.

What do you love most about your job?

I really love the interaction with the staff at Children’s. Everyone has been so personable and kind that it makes coming to work fun. I look forward to see what challenges are going to be brought to me; makes every day a little different.

When you were a kid, what did you want to be when you grew up?

I always wanted to be an entertainer of sorts. I had dreams of working as a music video director (yes, there were such things as music videos once). As time went on, I wanted to have a career in radio and television, so why not go to the next best thing — Best Buy. They sell a lot of TVs, so it was the closest I thought I would get to it.

subscribe_blogWhat do you enjoy doing outside of work?

Outside of work I spend a good portion of my time with my 5-year-old son, Teddy. He is one of the coolest kids ever, and I’m not just saying that because he is my boy. He has tendency to surprise me every day with something new. I work on/own a live podcast network where we run 11 different talk shows a week. I produce a total of five different shows, and I’m an on-air host of two shows. One of those shows plays host to bar trivia twice a week where myself and two other hosts bring 60 questions each week to patrons who have a chance to win a lot of cool prizes. It definitely keeps me busy, which is good; keeps me out of trouble… sometimes.

When to vaccinate against measles

Joe Kurland, MPH

Our infection prevention and control team has received questions about the measles, mumps and rubella (MMR) vaccine from a number of concerned parents since measles and vaccinations began dominating national news coverage. Here we highlight the number of recommended doses and the times to receive the vaccine.

I want to protect my child. What is the recommendation for the MMR vaccine in Minnesota now?

Children’s Hospitals and Clinics of Minnesota, like most medical centers, follows the guidelines for vaccination as recommended by the Centers for Disease Control and Prevention (CDC) and Minnesota Department of Health (MDH).

  • Every child should receive two doses of MMR vaccine, with the first dose given between 12 and 15 months of age and second dose between ages 4 and 6 years old. The second dose can be given earlier as long as it comes at least 28 days after the first dose.
  • If a child will be traveling outside of the U.S., he or she may be given a single dose of MMR if the child is between 6 and 12 months old. However, any dose given before the first birthday will not count towards the regular schedule, and the child still will need the two doses as outlined above.
  • If an older child is unimmunized and wants to “catch up” on his or her immunization schedule, the child will need two doses of MMR vaccine separated by at least 28 days.

subscribe_blogAs with all medical decisions, you should discuss your concerns and plan with your clinician. Currently, the CDC is not urging earlier-than-usual vaccinations, even for young children traveling within the U.S. or attending daycare. But as the measles outbreak changes, new guidance may become available. Please continue to check Children’s and CDC websites.

The Minnesota Department of Health reported an international-travel-related measles case on the University of Minnesota campus Jan. 28. To date, there have not been any additional cases in the greater community, and children are not at increased risk.

A few additional points to remember:

  • Two doses is all that is required, and after that the child is considered immune.
  • Blood testing for immunity (or titer levels) is not recommended by the CDC.
  • If adults are unsure of their vaccine status, they should get at least one dose of MMR.

If you have been hesitant to vaccinate your children, take this as a wakeup call. Vaccine-preventable diseases such as measles are active outside of the U.S. and may be just a plane ride away. You can and should protect your children; immunize them.

Joe Kurland, MPH, is a vaccine specialist and infection preventionist at Children’s Hospitals and Clinics of Minnesota.

Iron Range boy beats heart problem

Tyler LaMourea, 10, plays football, hockey and baseball. (Photos courtesy of Tara LaMourea)

Tyler LaMourea, 10, plays football, hockey and baseball. (Photos courtesy of Tara LaMourea)

Tara LaMourea

My son, Tyler LaMourea, was diagnosed with tachycardia, a faster-than-normal resting heartbeat, when he was 6 years old. When he sat at home or school, his heart suddenly went from a normal beat pattern of 65 beats per minute to 230.

Tyler could feel his heart rate change from normal to racing. He never got dizzy or fainted, but he would get pale and feel exhausted. There are things that can be done to convert a heart rate back to normal, but they never worked for Tyler. Each time he had an episode his heart rate would climb higher and remain rapid for longer periods of time.

Tyler and his nurses

Tyler and his nurses

One day, I received a call from his school’s nurse and brought him to the hospital’s emergency room, where he would get an electrocardiogram (EKG), electroencephalogram (EEG) and blood work to make sure there was nothing else abnormal. Tyler’s highest recorded heart rate was 230 beats per minute for 2½ hours before it converted on its own. We were in the emergency room when I saw a monitor go from 230 beats a minute to 175 to 65 within three beats.

On Nov. 3, 2014, Tyler, now 10, had surgery at Children’s Hospital and Clinics of Minnesota’s Minneapolis hospital. When we got to the hospital, Tyler was nervous about the surgery — we all were — but all of the people we encountered were nothing short of wonderful, from the receptionist that did our paperwork to the nurses and doctors that took care of Tyler. One of the nurses came into Tyler’s room with the items he was to wear, and in her other hand were two blankets that are donated to Children’s from which he got to choose. Tyler was shocked that he got to keep the blanket. He said the blanket was special to him and he felt better knowing it was in the operating room with him and when he woke up he had it; it was one of the sweetest things to hear from him.

When it was time for Tyler to go to surgery, as parents, my husband, Jeremy, and I were able to go into the operating room with him before it began. Once he started to fall asleep, we left and the team inserted Tyler’s IV.

subscribe_blogWe were in the waiting area, and the nurse who was in surgery with Tyler would call us to provide updates during the 2½-hour procedure. When the nurse called for the last time, she said they were able to find the nerve that caused the issue and cauterized it. To confirm the surgery was successful, the team was unable to replicate Tyler’s rapid heart rate once the nerve was cauterized, which was a relief to us.

The doctor came in to talk with Jeremy and me about the procedure and what to expect in Tyler’s recovery. We live on the Iron Range, 3½ hours from Children’s – Minneapolis, and were concerned about Tyler traveling that far. We were assured that he was going to be OK as long as he lies flat for a few hours after surgery to get the incisions to close. We got into the room after Tyler woke up and explained to him that he had to lie flat. He was excited there was a Nintendo Gamecube in the room for him to use, so he was in good shape to lie down.

We made the journey safely home, and Tyler had to rest for a few days before resuming normal activities. He’s an active boy who plays football, hockey and baseball. His surgery took place at the start of hockey, and he missed four days of practice before he returned to playing. He was sore for about two weeks, but he would say, “It isn’t too bad.”

Tyler returned to hockey after heart surgery.

Tyler returned to hockey after heart surgery.

Nearly three months after surgery, you would never know Tyler had anything done or there ever was a problem. Children’s was the best experience for which we could have asked. Everyone we encountered that day was so supportive and courteous to us. We will never forget the great experience we had as well as how great they were to Tyler before and after his surgery. We all are grateful to everyone at Children’s and couldn’t have asked for anything more. Thank you to the staff at Children’s who help make a stressful situation for families into a positive experience.

From hopelessness to triumph: Eliana’s battle with chronic pain

Eliana, shown here in June 2014, was diagnosed with chronic pain disorder. (Photos courtesy of Cami Vogt)

Eliana, shown here in June 2014, was diagnosed with chronic pain disorder. (Photos courtesy of Cami Vogt)

Cami Vogt

Our story is not one of acute trauma or even an emergency. For some it may seem less than dramatic. But we hope our story will give courage and hope to all those other parents who cope with chronic illness in their child.

Our story is of a long journey; it tells of the amazing fortitude of one little girl, the perseverance of her siblings and the compassionate and enduring care of a team of experts.

Eliana, 8, visited Kavita Desai, Ph.D, on Jan. 21, 2015, at the Kiran Stordalen and Horst Rechelbacher Pediatric Pain, Palliative and Integrative Medicine Clinic.

Eliana, 8, visits Kavita Desai, Ph.D, on Jan. 21, 2015, at the Kiran Stordalen and Horst Rechelbacher Pediatric Pain, Palliative and Integrative Medicine Clinic.

We came to the pain and palliative care clinic at Children’s Hospitals and Clinics of Minnesota in January 2013 after two lonely and frustrating years of trying to find out the source of our little girl’s pain.

Eliana, then 6 years old, suffered almost constantly from severe headaches, stomach pain, deep body aches, chest pain and debilitating fatigue. We sought out every specialist we could think of, but there were no answers, and no freedom from her suffering. When our neurologist at Children’s, Elizabeth Gilles, MD, gave us the opportunity to consider this unique and groundbreaking clinic, we were skeptical. We had tried so much and were so tired. But we knew we had to try — for Eliana.

And so we found hope. That hope came from a team of experts who were willing to rally around not just Eliana, but our entire family. They showed us that they understood that chronic pain affects the entire family, not just the child. They validated her pain, our experiences and fears. They also gave us a diagnosis: chronic pain disorder.

Eliana continues to battle chronic pain and improve.

Eliana continues to battle chronic pain and improve.

But most of all, they showed us the effectiveness of what a team of specialists in pediatric pain could accomplish. At any one time, we may have up to five people from the team working with us. That lonely feeling of the past is gone; it’s amazing how much stronger you can be when you’re not alone.

We still are on this journey. Eliana has turned two whole years older since we first arrived at the clinic, which celebrated the grand opening of its new space this month. She has worked so hard and gotten so much better. But chronic pain in children is complicated and requires perseverance. The true hero in this story is our Eliana Faith, and we stand in awe of her fortitude.

None of this would have been possible without her amazing pain team at the Kiran Stordalen and Horst Rechelbacher Pediatric Pain, Palliative and Integrative Medicine Clinic. We are indebted to Stefan Friedrichsdorf, MDKavita Desai, Ph.D; physical therapist Andrew Warmuth, nurse Donna Eull, massage therapist Candace Linares, social worker Cindy Daughtry and receptionist Alison McQuade (our first line of defense!).

Thank you for believing in us, for partnering with us and for giving us hope. Let the journey continue — together!

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About the Kiran Stordalen and Horst Rechelbacher Pediatric Pain, Palliative and Integrative Medicine Clinic at Children’s – Minneapolis

Pain of any kind not only is disruptive to the life of a child, but also to the child’s family. Children’s has the largest, longest-running pain and palliative and integrative medicine program in North America. Children’s combines the best and most-appropriate pain medicines with the best integrative therapies (like massage, aroma therapy and biofeedback) to help alleviate kids’ pain. The pain clinic is made up of a diverse group of providers, including doctors, nurses, physical and massage therapists, psychologists and social workers – all of whom rally around children and their families so they can heal.

Get screened for type 1 diabetes at Twin Cities walk

The McNeely Pediatric Diabetes Center at Children’s – St. Paul is part of an international research network called Type 1 Diabetes TrialNet. It currently is screening relatives of individuals with type 1 diabetes (T1D) to see if they are at risk for developing the disease.

subscribe_blogThe TrialNet research study offers a blood test that can identify an increased risk for T1D up to 10 years before symptoms appear.

TrialNet offers screening to:

  • Anyone ages 1-45 with a parent, brother, sister or child with T1D.
  • Anyone age 1-20 with a niece, nephew, aunt, uncle, grandparent, half-brother/sister or cousin with T1D.

Children’s will host a free screening event from 7:30-10:30 a.m. Feb. 21 at the JDRF Walk to Cure Diabetes at the Mall of America. For more information or to refer eligible families, contact Brittany Machus, clinical research associate, at [email protected] or (651) 220-5730.

Mom grateful for Children’s care before, after daughter’s double lung transplant

Janice Eason and her daughter, Kali, 8 (Photos courtesy of Janice Eason)

Janice Eason and her daughter, Kali, 8 (Photos courtesy of Janice Eason)

Janice Eason

My dreams came true 8½ years ago when I became a mother to Kali Grace, the most beautiful baby girl. But little did I know how many people I would need to keep my dreams alive.

My water broke at 22 weeks, and Kali had to be delivered at 24 weeks. She came into this world weighing 680 grams, less than 1½ pounds, and with underdeveloped lungs. Before I could even see her, she was whisked away to the neonatal intensive care unit at Children’s Hospitals and Clinics of Minnesota, where she would spend the first eight months of her life.

Kali's baptism

Kali’s baptism

Kali was always one of the most critical patients on the unit and liked to keep all of her doctors, nurses and therapists on their toes to be sure they could handle anything. Her team did handle everything and more that Kali gave them. She was cared for greatly, and everything was done to be sure Kali was always getting what she needed. And her team always made sure that as her mother I was heard.

I was told that Kali would need to go home for hospice care if she didn’t receive a double lung transplant. We found a transplant center in Houston to perform the difficult surgery do the transplant. After a delicate recovery period, we came back home just after Kali celebrated her first birthday.

While there were other hospitals, doctors and nurses that helped care for Kali, Children’s, including the team at the Kiran Stordalen and Horst Rechelbacher Pediatric Pain, Palliative and Integrative Medicine Clinic, always has been the place where we received the best and greatest care.

Kali at Children's

Kali at Children’s

Kali is 8 now, but we have never been far from Children’s. We’re here multiple times a month for appointments and have a few hospital stays a year dealing with Kali’s ongoing conditions.

The Children’s staff have made Kali feel so comfortable with all she has to deal with in her life, and she loves everyone at the hospital who cares for her. I feel so blessed to have such a wonderful place to call our second home that is able to make my child feel like such a normal girl given all of her circumstances. We forever will be thankful to everyone who makes Children’s such an amazing place.

Kali continues to visit Children's for checkups on a regular basis.

Kali continues to visit Children’s for checkups on a regular basis.