“Miracles Happen at Riley”: Katelyn’s NICU Story

MYSTERY ILLNESS

Our daughter, Katelyn Petts

Katelyn arrived at Riley after spending a week in the NICU at another hospital. Katelyn was a full-term baby but had been unexpectedly battling lung disease for a week following birth and it was getting harder to keep her stabilized. She was being transferred to Riley to possibly be put on ECMO (infant life support) and no one was sure whether she would make it through the transport to Riley.

"We are firm believers in the idea that miracles happen at Riley."

The first couple of days at Riley were hectic as doctors tried to get a handle on her illness. She had lots of tests, but doctors could not figure out what was making her so sick. Dr. Diane Lorant gave Katelyn a cystic fibrosis drug to see if it would help. Dr. Lorant encouraged us from the beginning to believe in miracles. After two days at Riley, the miracle began; Katelyn started to stabilize longer than she ever had before. Many of the staff thought that she was improving clinically and encouraged us to believe the impossible: that our daughter would get better.

A NEW HURDLE

Throughout the next couple of weeks, Katelyn was able to wean off the ventilator and oxygen support. Mary Lynn Foster, RN, and respiratory therapist Donna Walker pushed to get her off of supports more quickly, allowing us to hold our daughter for the first time when she was 16 days old. After three weeks at Riley, Katelyn had only one major hurdle to overcome: drug dependency. She was given high doses of morphine and sedatives to survive and had to overcome withdrawal symptoms.

A MUCH-NEEDED RESPITE

One day was especially bad; she cried all day and numerous people tried to get her calm. In the late afternoon, Child Life Specialist Angela Brennecke came to our room and told us we needed to leave for the night – things were too stressful and we needed a break. She presented us with Indiana Pacers NBA playoff tickets and we were able to escape for a few hours and watch a Pacers win over the Miami Heat. It was a memorable night, especially because the NPs and nurses got our daughter to sleep without drugs and she has been drug-free ever since.

STAYING CONNECTED THROUGH MUSIC

While Katelyn was in the hospital, we stayed at the Ronald McDonald House and had to live apart from our 18-month-old son, Colin, most of the time. Music therapist Ann Hannan provided us with books and songs to share with him, including one of Colin’s now all-time favorite songs: Rocket Ship Run. This support really helped us to stay connected as a family even though we had to live apart.

OUR RILEY MIRACLES: HEALING AND HOPE

After 30 days in the hospital, Katelyn was released, completely off oxygen and feeding from a bottle. No one expected or can explain that. Katelyn’s smile and laugh warms our heart every day. Every happy moment we get to spend with our daughter, we attribute to the quality care we all received at Riley. Not only did they work a miracle healing our daughter, they healed our hearts through an extremely difficult time in our life and taught us to hope and look toward the future.

We are true believers in the idea that miracles happen at Riley. Our beautiful daughter is living proof of that.

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Amazing Grace: The photos that captured our daughter’s winning Moment

WINNING MOMENT

These pictures I have shared with friends this week capture just a fraction of the joy my family feels. Our daughter Grace is winning her battle with a brain tumor thanks to Riley Hospital, Dr. Joel Boaz and Dr. Jodi Smith.

SCARY DIAGNOSIS

When Grace was 3-and-a-half years old, she was diagnosed with a Grade II Oligoastrocytoma brain tumor. She had a right frontal resection/full craniotomy at Riley Hospital on March 1, 2010. Neurosurgeon Dr. Joel Boaz was able to remove a small portion of her tumor. The remainder was surrounded by a blood barrier. She underwent two years of chemo to try to kill anything remaining.

NEW PROBLEMS

Stephanie and Gracie Bennett

Grace finished treatment on February 14, 2012. In the fall of 2013, Grace started zoning off and became emotional and irritable. My gut was saying something wasn’t right. During a visit to my sister in Missouri, Grace had a full blown seizure and was unresponsive for 12 minutes! Belton Medical Center worked with Riley Hospital to get treatment started and then we traveled home the following day. We then met with Riley Neurosurgeon Dr. Joel Boaz, and he wanted to watch her closely.

Grace began having  big seizures about every four weeks. Then, in January 2014 she had three in one weekend. Dr. Boaz said he felt surgery was the only option. He told us that his colleague, Dr. Jodi Smith, was the best surgeon to handle Grace’s case. We love Dr. Boaz and have great respect for him, and so we trusted him in this decision.

SECOND SURGERY

Grace broke down and did not want to go through another surgery. She wasn’t that innocent 3-year-old anymore. She was more aware of what was going on and what could happen. After meeting Dr. Smith, we immediately knew she was going to take care of Grace. Grace loved her!

Surgery day came on March 31st of this year. After 12 hours, my husband Chris and I were called in to talk to Dr. Smith. She said that when she started surgery, Grace was having seizures every two minutes. Dr. Smith removed a cyst, some surrounding brain tissue that was dead and 99% of the tumor!

A FAST HEALER

Grace had some left side weakness and bilateral coordination issues. She started physical therapy immediately and started school work the following week.

After three weeks, Grace asked Dr. Smith if she could go back to school and play softball. Dr. Smith gave her the thumbs up! That weekend Grace played in her first tournament.

“YOU MAKE ME LOOK GOOD, KIDDO!”

Amazing Grace!

This week, Grace had her four month post-op appointment. Dr. Smith said, “Grace, you make me look good, kiddo!” She said Grace’s brain was healing great, and the MRI showed that only about 1% of her tumor remains!

Grace will have another MRI in six months and then we can hopefully graduate to every year. Grace loves Dr. Smith and so grateful for all she has done for her! Every time I see Dr. Smith I am filled with emotion.

I could never thank her enough for what she has done for Amazing Grace!

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My “Glimmer of Light”: A Riley Heart Center Story

Second Family

Riley arrhythmia technician Susan Gude is part of my "second family"

I became a Riley Kid when I was just two days old. I feel lucky that Riley Hospital for Children at IU Health has been a second home to me for as long as I can remember. I feel even luckier to be able to call the staff at Riley my second family.  Throughout the years, I have bonded with this second family more than I could have ever imagined, especially with arrhythmia technician Susan Gude.

The Extra Mile

When I hear the phrase “going the extra mile,” the first person who comes to mind is Susan. Not only does she ensure that I have the best medical care, she also makes my appointments special. Every time I have a check-up, Susan makes sure that she is the one to do my EKG. She has always known what school I attend, what activities interest me and who my friends are. She has gotten to know everyone in my family. Susan is like this with everyone, which is why I hear amazing things about her from every patient she meets.

A Helping Hand to Hold

Staff members like Susan have helped me stay positive during my Riley journey

Growing up, I had a lot of issues and limitations because of my heart condition, yet I was always able to control my heart rate thanks to medication. About two years ago, I was no longer able to control my heart when it started to go into flutter – it would beat rapidly without ever decreasing. Eventually I needed three cardioversions, a second open-heart surgery and a pacemaker.

A cardioversion is when you are put under anesthesia and your heart is electrically shocked back into rhythm. This is not Susan’s specific area of work, yet every time I went through this procedure, Susan would go to the operating room with me. She would just stand there and hold my hand or talk to me until they put me under. I never asked her to do this, she just did.

Glimmer of Light

Susan rarely shows up empty-handed when she visits. Here are just a couple of the stuffed animals she has given me.

Last year my cardiologist decided it was time for a second open-heart surgery. I spent 12 days recovering at Riley. Susan visited me almost every day during my stay, even if that meant skipping her lunch break. She never came by empty-handed. I have received about 10 stuffed animals from Susan just this year. Even though I was 18 when I had my surgery, I absolutely loved those stuffed animals. I still look at them and they remind me of Susan, which is about the most comforting thing someone could do for me.

I know Susan knows how much I appreciate her, but I will never be able to thank her for everything. She has always been a glimmer of light when life became dark. I am so lucky to call Riley a second family, and I am beyond grateful that Susan is such a big part of that family.

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Look at How These Selfless Gifts Are Helping Babies

Take a look. These machines are powerful examples of what philanthropy can do for children at Riley Hospital.

New EEG machines for the Riley NeuroNICU program illustrate the power of philanthropy

These are the newest in a fleet of 12 EEG machines at Riley. The new additions are dedicated to monitoring the brains of babies in the Riley Newborn Intensive Care Unit (NICU). The machines are just one component of the new NeuroNICU program, made possible by the generosity of The Berman Family Foundation. Only a handful of children’s hospitals in the country have such a program.

Dr. Ulrike Mietzsch is the Riley neonatologist who leads the NeuroNICU program in partnership with pediatric neurologist Mandy Harris, M.D.

We asked Dr. Mietzsch to explain the significance of this philanthropic gift:

Riley at IU Health Applied Support Analyst Matt Holloway makes adjustments to the EEG monitors

“These EEG machines are enhancing the care we can provide to babies, and decreasing the infection risk at the same time, as these machines no longer have to travel through the entire hospital. My colleagues and I are so thankful for the donors who have made Riley’s tiniest patients their personal priority.

Our main goal is to provide every baby in the Riley NICU with optimal neurological and developmental care. Our NeuroNICU program offers personalized neuromonitoring for the patients who are at risk for seizures or alterations of blood and oxygen flow to the brain. We are constantly reviewing and updating our treatment protocols and guidelines, reviewing our imaging options and identifying areas for improvement.

Longer term, we are communicating with other similar programs in the country to form a nationwide initiative and optimize brain care in neonates. The Riley NeuroNICU has joined a consortium called NICQ Next, managed by Neonatal Neurocritical care leaders from Stanford and UCSF (University of California San Francisco) as part of the Vermont Oxford Network (VON). This will definitely help us to share best practices, learn from others and develop research collaborations.

Video cameras mounted on the EEG machines allow babies to be monitored visually at all times

We are starting a comprehensive prenatal counseling clinic this fall to address families who are expecting a baby with neurological or neurosurgical problems; we also would like to expand our follow-up clinic, which so far has been very successful with an extremely high follow-up rate. The bottom line is Indiana’s babies are getting the care they need for brain disorders and injuries – and this will help them lead full lives as toddlers, school-age children, and adults.

Thank you to The Berman Family Foundation, and to all donors who support Riley Children’s Foundation. Your selfless gifts enable us to give our patients the exceptional care they deserve.”

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“This makes my heart so happy!” A day in the park shows kids the fun side of dentistry

Kids in the Park

Our University Pediatric Dentistry Booth at the WYFI Kids in the Park event

This was the second year that University Pediatric Dentistry Associates participated in WFYI Kids in the Park. With the event moved to White River State Park, attendance was at an all-time high! We wanted the public to know about us because people don’t associate dental with Riley Hospital and IU Health. Our message is that dental decay is a disease that is 100 percent preventable.

Dental Health Show and Tell

Blocks doubled as teeth, Play-Doh symbolized plaque, and yarn represented floss

This year we distributed 300 backpacks, as well as toothbrushes and child dental care literature. It was so much fun working with the children—we had a great time! We used Mega Bloks to represent teeth, Play-Doh to mimic plaque, an over-sized brush to serve as a toothbrush, and yarn to demonstrate floss.

Kids could see that between the “teeth” the gunk wouldn’t come out with just brushing, so they needed to floss correctly. This, I must say, was a BIG hit! Kids giggled when they got it, and some would high five our volunteer. The teachers who came by said they were going to use that idea in the classroom.

A Long, Fun and Rewarding Day

At the end of the day, Charlotte (our OR coordinator and volunteer) and Dr. Sanders were making plans for next year. This made my heart so happy! It is a long day, and I always fear I can’t get volunteers to stay more than an hour, but they all had a ball. Dr. Matt Damin, the dental resident, stayed all day. Dr. Amy Goodlett wished she could have stayed longer. My daughter Katie came with the intention of helping me at the end of the day to tear down.  She got right in on the brushing activity, and just loved interacting with the kids. She said, “I’ll help all day next year, Mom!”

Our Youngest Volunteers

Dental assistant Heather Sodgrass (second from left) with her daughters Phia and Lillie Steele, and dental assistant Rachael Goldstein (right) kept the day fun and active

The two volunteers that really made me most proud were the young daughters of my co-worker, Heather Sodgrass. Phia and Lillie were AWESOME. I think because they were kids, the children came to our booth more willingly. They did everything from unloading supplies, to showing how to brush, to face and hand-painting.

It was a great way to reach the public, answer questions and get kids headed toward dental health. My volunteers were great advocates for Riley and IU Health at this event.

They all make me so proud!

Did you know? Riley Children’s Foundation provides philanthropic support for the Riley Dentistry team through the Ralph E. McDonald Professorship in Pediatric Dentistry. This fund supports Dr. Jeffrey Dean and has also paid for things such as guest lecturers, new dentistry textbooks and an online archive showcasing the work of pediatric dentistry graduate students.

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“I won’t lie, it’s going to be tough.” A Mentor’s Camp Riley Story

Venture Beyond the Woods Mentor Olivia Mozzi with Camp Riley camper, Parker Timberman, Brazil, Ind.

I have the honor of serving as a mentor for two campers who attend Venture Beyond the Woods at Camp Riley. Mentors are either in college or employed, and they have personal experience dealing with a disability. They act as role models when campers return home and deal with school, issues with family and peers, and decisions about post-secondary education and employment.

I know I can count on my campers to be honest. Our conversations range from typical teenage issues to deeper discussions of what it means to live with a physical disability. The shared experience of disability enriches our relationship. I know how it feels when someone stops you at the grocery store to say that you are an inspiration—just for leaving your house to buy food.

My campers are ambitious. They are writing novels and auditioning for lead roles in the school play. But they are also frustrated. They recognize the gross under-representation of people with disabilities in society. One camper I work with, Parker Timberman from  Brazil, Ind., discovered that his favorite computer game, The Sims, did not offer the option of creating a character who uses a wheelchair. “I tried playing as an able-bodied person for a while, but I stopped because it wasn’t me,” he told me.

I wish I could tell my campers that these feelings of isolation won’t last after high school. The truth is, living with a disability will always be tough. People with disabilities are the largest minority in the United States, but it is rare that we see each other on college campuses, in the workplace and in media.

The mentor program for Venture Beyond the Woods helps to fill that void. This past weekend, 15 mentors traveled to Camp Riley to meet campers. They made s’mores, played games and swapped stories. “She’s the coolest person ever,” one camper raved about her mentor, an attorney. Everywhere you looked, people with disabilities were the majority.

Parker and I will soon share another experience: scuba certification. Each summer, Epsilon Sigma Alpha (ESA) Indiana and the Cody Unser First Step Foundation provide a day of scuba diving for Venture Beyond the Woods campers. A few campers go on to finish their certification. Parker earned his certification in January, and I began my training this summer.

Parker warned me that scuba training would be difficult. He stayed poolside during my first lesson as I struggled to master the skill of clearing a flooded mask.

When I finally surfaced with a clear mask, I heard Parker cheering the loudest.

If you are interested in serving as a Venture Beyond the Woods Mentor, please click here. Applications are being accepted through August 18, 2014.

Mentor applicants will also be asked to submit two references. Click here for our reference forms.

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A Diving Moment

This was diving weekend at Camp Riley. On Saturday, through the generosity of Epsilon Sigma Alpha (ESA), three campers began their journey to become certified divers by learning introductory skills in the Butler University pool. The next day 25 plus campers were introduced to scuba diving in the Bradford Woods’ pool by the dynamic teaching duo of Michele and Bill Monsam, who have traveled from the Cody Unser First Step Foundation in Albuquerque to volunteer with the campers for five years.

Diving Photo

Dive Instructor Bill Monsam with Teddy Coppes, on the left, and his cousin Sam Pepper, who will be Teddy's dive buddy as he works to become certified.

As there have been each of those five years, there were many memorable moments from the weekend. Funny, moving, courageous moments. And this year, for me, one completely unforgettable moment.

M had finished having a great time diving when I joined her in the shade at the picnic table by the pool. M has cerebral palsy that affects her speech, mobility and movements. As she sometimes struggles to talk, she has the most remarkable habit of stopping at the end of a sentence, looking into your eyes and engaging you in a moment of mutual understanding.

She was telling me something about her family when she stopped and asked me if I knew why she was sure there was a God. She explained. “I wasn’t supposed to ever be able to think or to talk when I was born. I was just supposed to be like a baby all of my life. But today I went scuba diving. I breathed under water.” She paused and looked into my eyes and asked, “Do you get it?”

What happens during diving weekend at Camp Riley is about so much more than diving.

I get it.

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“Beyond Beautiful”: Carter’s Camp Riley story

One-of-a-Kind Kid

Carter has loved his adventures at Camp Riley

My son Carter Patrick is one of a kind. He is almost 10 years old, and while all kids are made from their own special mold, Carter is truly an individual.

Carter has a chromosomal condition that is so rare there isn’t even a name for it. There is a partial trisomy of his 16th chromosome and a slight deletion of his fifth. Early on he faced more medical issues including seizures. His condition has left him non-verbal.

We don’t quite fit into the autism spectrum community, nor the Down Syndrome groups. Instead, we are often isolated and lonely, thrust into the role of accidental trailblazers.

A Rare and Exhilarating Adventure

With such an uncertain path, there aren’t many opportunities for Carter to just be a typical kid. Camp Riley has been one of these exhilarating experiences. It is beyond beautiful to see him have the chance to go off without us and have fun.

I love to see him gaining some independence and learning about life outside of the family that adores him so much. He gets to explore and be free from misunderstanding, judgment and ignorance.

Investing in Kids

This was Carter’s second year at Camp Riley. They have the most unbelievable staff! I was so touched and impressed at the attention to detail. Knowing that he was a returning camper, the staff made sure he got to stay in the same cabin as he did last year so he would be more comfortable.

They invested time in getting to know Carter so they could help him blossom. They even pulled out the guide I had made last year about Carter’s own personal sign language!

Joy Beyond Words

When camp was over, I was worried about how I would know whether Carter had really enjoyed himself since he is non-verbal. But when the staff informed me that he was doing his famous “jump and spin” move, I knew that he had loved his experience. He normally doesn’t like to sleep away from home, but he adored Camp Riley.

A Remarkable Gift

Camp Riley is very affordable for families like ours thanks to donors who support Camp through Riley Children’s Foundation. There is a sliding scale depending on each family’s income and circumstances. Expenses for therapies, medical bills, medications and durable equipment can rapidly drain a family’s resources, and we are still on a wait list for a waiver to help us with Carter’s needs. The extra expense that Camp Riley absorbs for each child is a truly remarkable gift.

We feel so blessed by what Camp Riley has offered to Carter, and to us. We have a supportive family, but it has been uplifting for us to have a little break, knowing how much fun Carter is having and what great care he is receiving.

Thank you, Camp Riley, from my family and me, but mostly from an uncommon little boy who jumps in joyful circles when he has had the time of his sweet life.

If you would like to make a gift to Camp Riley to help other children enjoy this empowering experience, please click here.

 

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Elise’s wagon: A special memorial to my niece

My family and I released a Riley wagon into the fleet in memory of my niece, Elise

Elise Ryne Rochman is my niece who passed on January 28, 2011 at the age of six after living with Tay-Sachs Disease. While she was never a patient at Riley Hospital, I had the chance to share her memory with my fellow team members as well as children and families here.

As a donor to Riley Children’s Foundation, I was presented with the opportunity to dedicate a Riley Red Wagon in her name. Not only did I get to name the wagon, but I also had the privilege of having my sister and brother-in-law travel from Illinois to participate in the release of the wagon into the fleet.

I do not have adequate words to express how meaningful this experience was to my family. The best part for me was seeing the smile on my sister’s face and my nephew jumping up and down with excitement (squealing “Lisee’s wagon!”) when a family checked out Elise’s wagon for the first time. My sister was deeply moved, and could not stop saying how much she appreciated this special memorial.

Each child’s life has profound purpose.

How true.

Red Wagon Fund

Red wagons help families easily and conveniently navigate Riley Hospital, as well as offer children a fun diversion from what can be a stressful time. For a gift of $1,000, a personalized “license plate” acknowledging your gift will be attached to the back of a wagon.  Call 317-634-4474 or email mives@rileykids.org for more information.

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Our Camp Riley Love Story

Finding Joy at Camp Riley

Emily Church with Camp Riley camper Nicholas Hiles

Camp Riley provides an amazing experience for hundreds of Hoosier children with physical disabilities each summer; however it also leaves a lasting impression on the dozens of young adult staff who work there. The children, adventures and relationships create a life-changing impact that lingers long after summer ends.

My camp experience in 2009 started out as a summer job prior to my first year of occupational therapy school, but it quickly became something so much more than that. At Camp Riley, I found joy and excitement in seeing children accomplish things that most people would never dream they could do. I loved experiencing the contagious enthusiasm of campers as they tackled new challenges and lived life to the fullest. Additionally, it solidified my career choice by learning how to adapt everyday activities (and not-so-everyday activities!) for kids with a vast array of physical abilities.

Our Love Story Begins

For some people, Camp Riley might mean a renewed outlook on their abilities. Others may find a future career path. But for me, these summers also led me to my future husband.

Emily Church and Matthew Miller met and fell in love as counselors at Camp Riley

During my first summer at camp I met Matthew, a gregarious cabin leader who had returned after previously working there in 2007. We had many mutual friends, but only fleeting interactions with one another throughout the following months. We both returned to Camp Riley in 2010 and were immediately drawn together as returning staff members. Our relationship grew throughout that summer and continued long after the last camper had left. Three years later, Matthew proposed to me at Bradford Woods (home of Camp Riley) on our favorite spot overlooking the lake.

Our Wedding Gift to Campers

Emily and Matthew are making a gift to the Riley Children's Foundation Campership fund in lieu of wedding favors

We are getting married in August with multiple former camp staff (and campers) in attendance. While we are excited to start a new chapter of life together, camp will always be something that we share and look back on fondly, and will continue to be a part of our lives.

To honor a cause that is near and dear to our hearts we are making a donation to the Riley Children’s Foundation Campership Fund in lieu of wedding favors.

We are delighted to be able to give back to an organization that has made such an impact in our lives. We hope that our gift may impact the life of a future camper and their family.

If you would like to join Emily and Matthew in making a gift to Camp Riley, click here and contribute today.

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