Inside Gillette Blog


How to Make Your St. Paul Clinic Visit Easier!

Posted On: 09/22/2014

Part One: Arriving at Gillette Children’s Specialty Healthcare

By: Gillette’s Family Council

Gillette’s Family Council includes parents and caregivers of Gillette patients (members pictured below include Jo Schifsky, Tara Swedberg, Tracy Chipman and Steve Ekeberg.) We help Gillette promote patient and family-centered care and offer our perspectives on programs, departments, publications and projects. In short, we represent Gillette families! Through our experiences, we’ve learned a lot about making your time at Gillette as easy as possible—and we’re happy to share our top findings with you. If you have an appointment at Gillette’s St. Paul Clinic, these tips will help make your visit simpler and more efficient.

Make Parking a Breeze

Did you know you don’t have to waste time searching for a parking place at our St. Paul campus? And you can save money on parking, too!

  • Valet Parking: Stop at valet parking on Level D of the Regions Hospital West Ramp, between 8:30 a.m. and 5:30 p.m. If needed, valets will help you unload and show you to Registration. Then they’ll give you a claim ticket and park your vehicle. When you’re ready to go, they’ll bring your vehicle to you. And it costs the same as parking on your own!
  • Parking Discounts: Speaking of costs, stamp your parking ticket at Information and your parking will be only $3, no matter how many hours you’re here.
  • Frequent Parking Discounts: If your child is an inpatient, or if you’re at Gillette often, you can purchase a packet of five parking tickets for $10. Get them at Health Resources and Education—next to the Ginkgo Café, on the fourth floor near the skyway.

Don’t Carry It; Stow It

Does it feel as if you need another set of hands to keep track of all the items you bring to your appointments? Gillette can help!

  • Coats and Outerwear: Don’t cart your coats, boots and hats to your appointments. Check them free at Information, on the fourth floor of Gillette near Registration.
  • Lockers: Store the things you aren’t using—from snacks to extra clothing to books and other entertainment—in a fourth floor locker during your appointments. Stop at Information if you want to use a locker.

Stay tuned for Part Two: Entertainment and Information next week!

Get Involved With the Family Council!

Gillette is recruiting new Family Council members for 2015. You’ll serve for two years and attend once-a-month evening meetings. If you’d like to volunteer your time and provide Gillette with valuable feedback—or if you just want to learn more—contact Camille Feng at 651-312-3169 or cafeng@gillettechildrens.com.

 


Raising Spinal Cord Injury Awareness in a Kid-Friendly, Interactive Way

Posted On: 09/17/2014

Every 48 minutes, someone in the United States becomes paralyzed because of a spinal cord injury. September marks Spinal Cord Injury Awareness Month—a month focused on raising awareness about the need for better treatments, research and prevention of spinal cord injuries.


Teaching people about spinal cord injuries plays a big part in this month’s efforts to raise awareness about the condition, too. Approximately 200,000 people are living with spinal cord injuries in the United States. There is currently no cure for the paralysis caused by the condition. Depending on the location and severity of their injury, the changes and challenges faced by people who experience spinal cord injuries can range from mild to severe. For many of our spinal cord injury patients—including their family members and friends who are children—understanding how a spinal cord injury affects them or their loved one can be a difficult concept to grasp.


That’s why we’ve created a new interactive educational tool called “Exploring Your Brain and Spinal Cord”. The tool—specifically created with kids in mind—features a learning module all about spinal cord injuries. Kids can interact with and learn about different parts of the spinal column. We explain how certain types of spinal cord injuries affect the body in various ways and provide useful tips for interacting with people who've had spinal cord injuries.


You can try “Exploring Your Brain and Spinal Cord” here or visit Spinal Cord Injury and Related Neurotrauma to learn more about the care and services we provide for spinal cord injury patients at Gillette.


Hydrocephalus Awareness Month: Your Questions Answered

Posted On: 09/15/2014

By: Amanda Seeley, Neurosurgery Nurse Practitioner


Did you know that September is National Hydrocephalus Awareness Month? As one of four neurosurgery nurse practitioners at Gillette Children's Specialty Healthcare, I help our team take care of numerous patients with hydrocephalus, and answer many questions about this condition from patients, families and staff.  I also help lead the Hydrocephalus Association Walk at the Mall of America (photos below) to generate funds for research and create awareness! Here are the five most frequently asked questions about hydrocephalus and shunts.

This is my captionWhat causes hydrocephlaus?
Cerebrospinal fluid (CSF) is a water-based solution that flows in a certain path within our brain and spinal canal.  Usually, there is an even rate between how much CSF a person is making and how much CSF his/her body is absorbing.  Hydrocephalus occurs when there is a disruption in this balance or a block in the normal flow of CSF that naturally happens.  CSF can build up within the ventricles (fluid spaces) of the brain and can cause pressure to be dangerously high in the brain. There are many causes of hydrocephalus.  Babies can be born with congenital hydrocephalus.  Also, patients may have a high risk of developing hydrocephalus when they are babies because of an underlying diagnosis, such as spina bifida.  Other causes of hydrocephalus are acquired obstructions in CSF flow, like brain hemorrhage, brain tumor, or trauma.   

How is hydrocephalus treated?
Although there are a few medications that may temporarily treat hydrocephalus, the usual treatment involves surgery.  The most common treatment for hydrocephalus is a surgically implanted shunt.  This is a device that moves CSF from the ventricles of the brain to an area in the body where the patient can safely absorb it, most commonly within the sac that holds the abdominal organs, called the peritoneum. Working shunts can keep a patient’s brain at a normal pressure, but unfortunately can malfunction.  The average life of a shunt is about 5 years, but the range of shunt life is days to decades long.  The surgery to fix a non-working shunt is called a shunt revision.

My child has never had a shunt malfunction, how will I know if it isn’t working/what will it be like?
Every patient is different, but common symptoms of a shunt malfunction are headache, vomiting, sleepiness, and irritability.  I often tell patients, families, and caregivers to remember that it is not up to them to know if a shunt is working or not, it is up to them to let us know if they are concerned.  The neurosurgery team will help sort out if a patient’s symptoms are because of a shunt malfunction or something else.  Often times we use different imaging studies, like a head CT or brain MRI to get more information about the shunt’s function.   Remember that most episodes of vomiting and fever are not shunt related.


Will the doctor shave my child’s head during surgery?
Usually the pediatric neurosurgeons at Gillette Children's Specialty Healthcare do not need to shave a child’s hair for shunt placements or revisions.  Often, the surgeons will use dissolvable stitches that will not need to be removed after surgery as well.


Are there activity restrictions for patients that have shunts?

Our team generally does not recommend strict activity limitations for patients with shunts.  We do recommend avoiding scuba diving and sky diving due to the pressure dynamics, but otherwise encourage patients to be active and involved in the activities they wish to pursue.  Of course, we always remind patients and families to wear helmets appropriate for sports and activities as part of our general health recommendations.

 


What Miracle Treat Day Meant to my Family

Posted On: 08/29/2014

By Melissa Reich

Editor’s Note: Gillette Children’s Specialty Healthcare participated in Children’s Miracle Network Hospitals (CMN Hospitals) Miracle Treat Day on Thursday, August 14. The following is an open letter to the Coon Rapids Dairy Queen by Melissa Reich, Gillette Mom. Her family stoped by to greet staff, share their story and thank them for their donations to Gillette.

Dear DQ Crew,

My family and I would like to say a HUGE thank you for all you did during our Miracle Treat Day visit! My kids had so much fun and my husband and I were blown away by your hospitality. I would like to tell you a little more about my two kiddos that we celebrated with, Olivia and Elijah.

Olivia has Down Syndrome and a complication of that was a disorder called hip sublexation. Olivia spent over a week at Gillette this past January having reconstructive surgery on her left hip. While in the hospital recovering from her surgery, Olivia became quite ill which triggered a major asthma attack. We are so thankful  that we were in the hospital when this happened. I am unsure what Olivia’s outcome would have been if she were at home.

Olivia spent her recovery in a full body cast from chest to ankle for the next seven weeks. She also endured months of physical therapy re-learning how to walk. Unfortunately, this was not her first time in the full body cast and most likely won't be her last. Eventually she will need her right hip repaired..

Elijah was diagnosed with Epilepsy in October of 2013. He has been through a ringer of tests to find the cause of his seizures and the right medication.  Before his diagnosis at Gillette, he was having seizures almost every day. Due to the rarity of his seizure disorder, we had no clue he was even having seizures. Elijah became quite cognitively delayed due to the frequent seizure activity.  I am happy to report that he is doing much better with a new medication and is now starting to talk in full sentences. His brain is getting the rest it needs in order to focus on his development.

Both Olivia and Elijah have had a long and hard road. Their journey isn't over but my family is truly blessed to have an amazing facility like Gillette. We are eternally grateful to them and to amazing supporters such as Dairy Queen.

Thank you from the bottom of our hearts for you’re over the top generosity. We are very grateful for the smiles and laughs you gave our  kids!

The Reich Family; Kevin, Melissa, Cooper, Olivia, Elijah and Chance

 


Making Physical Therapy Fun

Posted On: 08/12/2014

By Katie Wilkins, Physical Therapist

When a child comes to physical therapy at Gillette Children’s Specialty Healthcare, we strive to make it a fun and interactive experience. We want children to try their best, and we work to find activities that they enjoy while strengthening their muscles or learning new skills.

Babies love to play with bright, colorful rattles, balls and musical toys. At all of our clinics we have an abundance of interactive and interesting toys for babies. At times we will ask families to bring in a baby’s favorite toy to make the environment feel more like home. I once had a dad bring in the family’s TV remote control and, as a result, I had the best session working with this particular baby.

 For toddlers and preschoolers, I love to set up obstacle courses. I may have the child start with a wheelbarrow walk, then crawl through a tunnel, jump like a bunny on a mini-trampoline, hop between frog lily pads, practice their balance by stepping over large obstacles, and finish by log rolling up/down an incline mat. When preschoolers or young children are learning to maneuver wheelchairs, I will set up cones with bean bags on top and see if they can navigate through the obstacle course without knocking over the bean bags. Kids have the best imaginations, so the best obstacle courses always contain adventures like going on a picnic, travelling to a princess castle, or visiting the zoo. Creativity and fun are key motivators to young children in therapy. 

Playing outside is always so much fun for kids and a way to show parents activities they can practice more at home. Our Burnsville and St. Paul locations have an outdoor playground. Climbing up ladders and through tunnels is excellent abdominal and leg strengthening. I often practice bike riding outside.  Scavenger hunts outside always include an uphill walk, curbs to climb, and thick grass to tromp through.  Children are often unaware they are strengthening their legs and working on their balance. To the child we may be going on a scavenger hunt, but I can find those teachable moments when the child bends down to pick up a rock to work on strengthening while he/she is squatting.

Adolescents find therapy at Gillette motivating and challenging. At all of our Gillette locations, we have the Wii available to work on balance and strength activities. I often set up cones and agility ladders to simulate soccer, basketball or gym class drills. We will go outside to practice throwing and catching balls, running drills, or walking with a new walker or crutches. I will set up a simulated errand to a grocery store practicing reaching up on shelves and squatting down to put items under the cart.  I often play trivia games or play music while they are exercising on a treadmill, stationary bike or stretching.  I can videotape skills they are learning to help them refine their technique. We strive to create a safe environment for adolescents to practice new skills or return to the activities they enjoy.

 All of our Gillette locations have the equipment, expertise and environment to provide high quality care that is fun and engaging. By providing playful and fun therapy for children of all ages, we are able to help our patients get back to doing what they do best, which is being a kid! 

 

 

 

 


Care Coordination: Finding the Best Ways to Care for Our Kids

Posted On: 08/08/2014

Gillette has been taking care of children in Minnesota—and across the country and around the world—for more than 100 years. We’ve learned a lot about the best way to take care of kids who have disabilities—and an important part of what we do is share that information. Now the State of Minnesota is helping us spread the word.

The Minnesota Department of Health recently awarded Gillette a three-year, $480,000 grant to identify and test something called “models of pediatric care coordination.” Care coordination is a concept that involves delivering the right care and services at the right time to people who have complex medical needs. In other words, it’s not just about medical interventions. It’s about a methodical approach to bringing together everything a patient with a diagnosis—such as cerebral palsy—needs so that the patient’s health and well-being improves. It also involves strong partnerships between health care and community organizations.

“Care coordination is a hot topic in health care right now, but the term is under-defined and often misused,” explains Holly Bronson, manager of Gillette’s statewide clinics. “Our work will involve helping the Minnesota Department of Health better define what care coordination means for children with complex medical needs.”

The grant—awarded only to Gillette—helps fund, among other things, a licensed social worker, a registered nurse and a scheduling specialist to aid families in their care navigation. When patients need specialty services not available in their local community, for instance, the scheduling specialist will help coordinate multiple Gillette appointments on the same day.

Because of this grant, Gillette will partner with four primary care clinics across Minnesota: Mankato Clinic; Sanford Bemidji Clinic; Fairview Range – Hibbing Clinic; and HealthEast Roselawn Clinic in St. Paul to evaluate the effectiveness of various models of care coordination. We’ll work together to discover how Gillette’s specialty care model can best communicate and integrate with our primary care partners. Then, we’ll work with the Minnesota Department of Health to disseminate our findings across the state.

We are excited for our innovation and expertise to come together as we constantly strive to find new ways to improve the quality of care for our patients.


Connor’s Journey: An Update

Posted On: 07/31/2014

By: Becky Miller

Editor’s Note: This May Connor Miller was featured in a KSTP Story. Click here to watch it now and then catch up with Connor below.

Connor is an energetic, (very!) opinionated and happy one-year-old.  He has a zest for life that is difficult to explain in words.  Perhaps it is because of the physical challenges he has had to overcome, or perhaps he simply loves life.  Regardless, his energy and excitement are contagious – it is almost impossible to avoid smiling when he is near! 

Connor’s journey at Gillette began when he was just 1-month-old. Throughout the past year, Connor has accomplished some pretty amazing things -- he learned to crawl, a milestone that we were unsure he would ever achieve, he celebrated his first birthday, he learned to walk, and, most importantly, he made it through another surgery at Gillette! 

At our visit with Dr. Van Heest in April, she observed that Connor’s use of his wrist and hand remained relatively limited and unchanged since our previous check-in. She explained that, as a result of his previous injury and surgery, Connor had built up a significant amount of adherent scar tissue in and around the tendons in his wrist and hand. She recommended that an additional surgery be performed to remove these adhesions, in hopes of significantly improving his ability to actively use his left arm and hand.  This surgery, his third at Gillette, was completed on July 11, 2014.  Dr. Van Heest was able to remove a significant amount of scar tissue and we have already seen improvements in Connor’s passive and active range of motion!

After a brief break from occupational therapy to allow his incision to heal, Connor restarted twice-weekly OT visits. As a somewhat stubborn (have I mentioned opinionated?) one-year-old, these visits are proving to be more difficult than they used to be.  As he continues to get older, he wants to play and he most certainly does not want anyone touching his arm! We are extremely grateful for the wonderful care and patience that his OTs, Alex and Lindsey, show toward him during his visits. They know his personality well and are great at finding creative ways to both entertain him and address his therapy needs.

As we think about Connor’s future (which we do a lot!), whether or not he will need additional surgeries is unknown. What we do know, however, is that he has a fantastic team of medical professionals standing behind him to help guide our family in making the best decisions on his behalf.  We are, and forever will be, incredibly grateful for the amazing care that he receives at Gillette!


 

 


For Kids Who Have Disabilities, Keeping Active Means Keeping Healthy

Posted On: 07/24/2014

Jersey Berqual is only 4, but already she wants to keep up with her dad.

That’s a tall order, because he’s a marathoner. And Jersey has spina bifida, which causes weak muscles, a lack of sensation in her legs, and other effects.

Nevertheless, she’s so energetic that she once wriggled out of her leg casts.

Activity Equals Better Health
The Berquals know that physical activity is important to Jersey’s long-term health. They are looking for a running stroller or adapted bike to help Jersey take part in her dad’s training runs.

“But we want her to have her own options, too,” says her mom, Marissa. That’s why Jersey swims, goes to adapted playgrounds and hopes to start adapted skiing next winter.

Regular activity results in better balance, mental health, and fitness. But many people who have disabilities don’t get enough exercise. Obesity rates for children who have disabilities are 38 percent higher than for other children. And adults who have disabilities are three times more likely than others to develop heart disease, diabetes or cancer.

Social Benefits, Too
“The importance of sports and recreation goes beyond physical health,” says Krista Ash, therapeutic recreation specialist at Gillette. “Things like biking and adaptive sports give kids and adults opportunities to be social with their family and peers. That’s huge.”

It’s never too early to start looking for ways to keep kids active. Options might include walking, wheeling in a manual wheelchair, swimming laps, doing water aerobics, or playing adapted basketball, tennis, softball or other sports.

Krista touts the benefits of adapted bicycles, saying that to date she hasn’t worked with a patient who couldn’t benefit from one. Teenagers and adults can get involved, too. “Once a mom came to an adapted bike information session with her adult child, who uses a wheelchair,” Krista recalls. “She said to him, ‘I’m so sorry that you can’t ride a bike,’ and I immediately told them, ‘Absolutely you can!’”

To Learn More
Gillette can help you find resources in your community for beginning or maintaining a physical activity program. To learn more:

  • Email Recreation@gillettechildrens.com.
  • Call Krista Ash or Beth Harmening at 651-312-3138 (for patients 15 and younger)
  • Call Kaitlin Lewis at 651-325-2213 (for patients 16 and older).

Severe Epilepsy: How Gillette Clinicians are Improving Outcomes

Posted On: 07/18/2014

By Samuel Roiko, Clinical Scientist

As a regional leader in pediatric epilepsy management, Gillette Children’s Specialty Healthcare treats patients who have some of the most complex, and chronic, seizure disorders seen in children.  We offer our patients state-of-the-art treatments and services to help them achieve the best possible health, independence, and happiness.  Part of that commitment also includes research into things like SUDEP (Sudden Unexpected Death in Epilepsy).

As its name implies, SUDEP is a sudden, unexpected, non-traumatic death in a patient with epilepsy – without evidence of a structural or toxicological cause of death. The SUDEP rate is estimated to be 1.22 out of 1000 patients with epilepsy, but there are many factors that increase the risk of SUDEP. For example, the presence of an underlying central nervous system (CNS) disease, the age of the patient, and the age of onset of epilepsy all increase the risk for SUDEP. 

At Gillette, we believe that every child lost to SUDEP is one too many.  That’s why we were excited to participate in the 2014 PAME (Partners Against Mortality in Epilepsy) conference, held this June in Minneapolis (pictured above).  The goals of the conference were to foster knowledge, improve awareness, and hasten action around SUDEP. It was the second meeting of its kind, where clinical, basic science, and patient/family attendees came together to understand and support each other.

As clinical scientist for Gillette’s Center for Pediatric Neurosciences, I hoped to learn more about the state of the medical and research community regarding SUDEP.  How SUDEP happens is not known. The brain, heart, and lungs all form an intricate, intertwined network, and increased activity in certain areas of the brain can result in a lower rate of breathing, which can lower the heart rate, resulting in a spiraling loss of function. It is difficult to precisely determine what is the primary cause.

Many presentations gave hope with new advances. Serotonin and adenosine are two of many brain neurotransmitters in the brain that have been studied. Serotonin plays a role in heart rate and respiration, while adenosine is involved in wakefulness and arousal. Selective Serotonin reuptake inhibitors (SSRIs), commonly prescribed drugs, are a potential therapeutic to prevent SUDEP. Adenosine activity increases in mouse models of SUDEP, and can be blocked by caffeine. These intriguing findings raised many questions – more indication that further research is needed.

My colleague, Beverly Wical, M.D. emphasized the importance of increasing the awareness of SUDEP, and that we at Gillette are involved in research studies regarding SUDEP. We are actively working with colleagues across the country to form a national consortium to study SUDEP and its prevention. We owe it to our patients!

 


Gillette Families Advocate for Kids’ Health Care at Nation’s Capitol

Posted On: 07/09/2014

On June 24-25, families representing children’s hospitals throughout the U.S. took to Capitol Hill with a unified mission — to raise awareness, among members of Congress, of the important issues impacting children’s hospitals and pediatric health care today.  It was all part of Speak Now for Kids Family Advocacy Day, an annual initiative of the Children’s Hospital Association. We’re proud that two of those families, the Wittrock family of Burnsville, Minn. and the Harbarth family of Mankato, Minn., represented Gillette Children’s Specialty Healthcare.

The Wittrocks and Harbarths know firsthand the many issues that families of medically complex children often face.  Brandon Wittrock, 17, and Madison Harbarth, 7, are longtime patients of Gillette, a St. Paul-based hospital with outpatient sites throughout the state.  This made them ideal families to meet one-on-one with the state’s legislators, sharing their personal stories and stressing the important role Gillette plays as one of the nation’s only specialty care pediatric hospitals.

“Brandon was a million dollar baby by the time he was three days old,” Sheri Wittrock told members of Congress, referring to the cost of care when her son, Brandon, was born.  “Without Gillette, he wouldn’t be sitting here talking with you today.”

During their time in Washington D.C., the Wittrocks and Harbarths, along with Gillette representatives, received a warm reception from Senator Al Franken, Rep. Betty McCollum, and staff members from Senator Klobuchar and Rep. Tim Walz’s offices.  

They also had the opportunity to meet a national celebrity—Dr. Jennifer Arnold, a pediatric neonatologist and co-star of TLC’s The Little Couple, who participated in Family Advocacy Day with her husband and two children (Madison Harbarth is pictured with Dr. Arnold and her daughter, Zoey).  

Many thanks to our Minnesota representatives, Children’s Hospital Association staff, and our amazing patient families for a memorable and productive time in our nation’s capitol!


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