Clinical Support Services Celebrates Spring with South Park Inn Residents

Connecticut Children’s Division of Clinical Support Services and the Division of Clinical Support Services Advisory Council joined forces to help spring bloom at the South Park Inn Homeless Shelter in Hartford. Earlier this year, the team held a fundraiser to bring that idea to life.

Group4Giving back to the children and families of the local community is a huge priority for the Division of Clinical Support Services, which includes 240 employees across the following ten departments: Clinical Nutrition, Pharmacy, Radiology, Physical Therapy, Occupational Therapy, Speech Language Pathology, Respiratory, Neurodiagnostics and Sleep, Cardiopulmonary Services and Audiology.

IMG_4115On March 3rd, staff from these departments decorated the walls and tables of the South Park Inn for a spring dinner that served approximately 100 meals, a portion of which was donated and prepared by the Food Services department.  One volunteer from each department was present at the Inn to serve and help prepare dinner meals for those unable to attend due to their work schedules.

IMG_4099The decorations and centerpieces spanned from paper, silk and crocheted flowers to a flower pot composed of colored pencils. The room was completely transformed in celebration of the new season and the residents were pleasantly surprised, expressing their appreciation for the special evening.

IMG_4111“This event allowed us to interact with local families in a caring way beyond our role as medical care providers” said Katherine Vance, Registered Dietitian for the Center for Digestive Diseases. “I was so proud of the multiple ways my coworkers in the Division of Clinical Support Services worked together to create an event to nourish and cheer people who needed a little bit of both. I think it brought us all closer together and more connected to our immediate community.”

Daylight Savings Time: Ways to Prepare

Connecticut Children’s  “Bedtime Doctor” Lynelle Schneeberg, PsyD, joins our blog to share some valuable techniques that can help prepare you and your family for Daylight Savings on March 12.

cute little girl on morning

There are two ways to prepare for Daylight Savings Time. Adjust gradually during the week before the change: If your child goes to bed at 8pm, put him or her to bed at 7:45, 7:30, and so on until you have made up the hour. Adjust naps, too. OR you can…

Adjust on the actual weekend of the change: On Saturday night, adjust the clocks in your home after your children go to bed.  On Sunday morning, get your children up at the time they’ll need to rise on Monday morning.  On Sunday,  you will also want to expose them to sunlight at the “new” rise time for at least 30-60 minutes (play/walk outdoors) and have breakfast at the new time, too.

~ All day Sunday, do everything at the new time (meals, naps, bedtime routine) and put them to bed “on time” (an hour early but read longer perhaps).

~ Using your typical bedtime routine will help to cue sleep.

~ Try to help your children go into the change well rested.

~ Be patient if your children are short-tempered during the first week of the change.

~ It should take your children about a week to adjust.

In addition, it always helps to get up at about the same time each day, every day.  The weekend rise time should not be more than an hour or so later than the weekday arise time.  This helps to keep the “body clock” set properly.  Sleeping in later on the weekends makes it much harder to go to sleep on a Sunday night, for example, because there has not been enough “wake time” to let the body know that it’s time for sleep again at the desired bedtime.  Consistent wake times also help decrease irritability at rise time work and school days.

In the morning, try sunlight exposure to help with awakening at the desired time.  The bed can be situated near a window with open drapes.  If outdoor sunlight exposure can be obtained, this is even more ideal.  Perhaps breakfast can be eaten outdoors or while waiting for the bus for a school-age child or teen or perhaps some time can be spent outside after arriving at work or school during a break.  Sunlight exposure signals the brain to “wake up” fully and sets the clock for the same rise time the next day.

Some light physical activity (walking the dog or walking to the bus stop) and a breakfast with protein (a protein shake or an egg, for example) are also helpful.  On the weekends, schedule an enjoyable activity to take place at the desired wake up time so it is not so difficult to get up.

Some teens and adults may also benefit from a small dose of caffeine (perhaps a cup of strong tea or coffee) in the morning but generally, large amounts of caffeine should be avoided.  Use the word CALF to remember how to set the clock: Caffeine, Activity, Light (sunlight) exposure and Food.

Connecticut Children’s Sleep Center specializes in diagnosing disorders that disturb children’s sleep. To learn more about our center, please visit http://www.connecticutchildrens.org/our-care/sleep-center/

Steven’s Incredible Journey Begins with 140-Day NICU Stay

steven-lefevre-nicu-photoMegan Lefevre’s first pregnancy was a difficult one. She threw up about three times a day and lost 12 pounds in the process. But the difficulties she endured during her pregnancy did not prepare her or her husband, Paul, for the challenges that lay ahead when their son, Steven, was born prematurely at 27 weeks on Oct. 24, 2012 –three months early.

“I woke up with terrible back pain and my stomach was as hard as a rock,” the Woodbury resident recalled. Following a 12-hour stay in a local hospital, Megan was transferred to UConn Health at John Dempsey Hospital for the next four days. While there, she gave birth to Steven, who weighed 2 pounds, 15 ounces, and measured 15½ inches long. But after 28 hours in Connecticut Children’s Neonatal Intensive Care Unit (NICU) in Farmington, Steven was rushed to Connecticut Children’s Medical Center NICU in Hartford, where he underwent emergency surgery to fix a perforation in his small intestine.

It was the first of several surgeries, dozens of procedures and “countless scares” for Steven’s parents. Steven remained in Connecticut Children’s Level 4 NICU for the next 140 days and returned several times to the Medical Center for follow-up treatment and hospitalization.

Big Scares
“Our first big scare was driving from Farmington to Hartford,” said Megan, who teaches first grade in Oakville. “We worried whether our baby would live.” “At one week old, Steven had a grade 2 brain bleed and increased fluid,” Megan said. “The following week, he had a grade 3 brain bleed with increased fluid. The blood vessels in premature babies’ brains are very fragile and can burst easily,” she explained.

lefevremomchild4x6Their second big scare came when Steven needed surgery for hydrocephalus, a condition in which fluid accumulates in the brain after brain bleeds. Initially, a reservoir was placed from which the neurosurgeons could draw off the extra fluid as needed. After his brain bleeds, Steven had pauses in his breathing because of the increased pressure in his brain from his hydrocephalus.

“His heart rate would drop and his blood oxygen level would drop,” Paul said. “Sometimes he would turn gray, other times he would turn blue and need oxygen resuscitation.” After undergoing shunt surgery to permanently drain the extra fluid, Steven was remarkably better, his father said.

Overcoming the Obstacles
From pneumonia and chronic lung disease to an enlarged liver and urinary tract infections, Steven fought many battles in his first few days, weeks and years of life. From weekly eye exams for grade 3 retinopathy of prematurity that can lead to blindness – to surgery for a tethered spinal cord – he also underwent numerous procedures and has been followed by many specialists along the way, including Marilyn Sanders, MD, a Connecticut Children’s neonatologist, who cared for Steven during his NICU hospitalizations. “He had many problems typically seen in very preterm babies and some unusual ones, including surgical and growth concerns,” said Dr. Sanders, who continues to follow him in Connecticut’s Children’s Neurodevelopmental Follow-up Program. “Given how sick he was in the NICU, he has done amazingly well.”

“Steven came home from the hospital in March of 2013,” his mother said. “He began rolling around at 10 months, sitting at 12 months, crawling at 18 months and walking at 2 years of age.”

In October 2015, at age 3, he started preschool. “He can walk, he can talk. He’s an easygoing child, who is very likeable and very social,” Megan said.

steven-lefevre-family-photo-fall-2016Grateful for Care
Steven’s family – which includes half-brother Matthew, 17, and sister Shayla, who turned 1 in March – is happy about his progress.

“We are so grateful for how well he is doing because of the amazing help he received,” said Megan, who keeps in touch with many of Steven’s caregivers at Connecticut Children’s. “He had the best care possible.”

Connecticut Children’s Advocates: Kelly’s Story

Kelly Ray, patient at Connecticut Children’s Medical Center, shares her inspiring story with members of the  Appropriations Committee on February 16, 2017.

fullsizerender-00000005Senator Osten, Senator Formica, Representative Walker, members of the Appropriations Committee, thank you for this opportunity to speak to you all today on behalf of the hospital that saved my life. My name is Kelly Ray, I was born here in Connecticut, I am fourteen years old and a pediatric cancer survivor.

On August 27, 2012, my mom noticed a strange swelling on my left shin and took me in for an X-ray. That X-ray led to a slew of tests and finally, a biopsy of my shin bone to inspect a suspicious lump. When I awoke from surgery at Connecticut Children’s, I was diagnosed with bone cancer: Osteosarcoma, in my left tibia.

Dr. Michael Isakoff, (also known as Dr. Mike) my oncologist at Connecticut Children’s, explained that I would need almost a year of intensive chemotherapy, that I would lose my hair and that I’d have to spend over 120 nights in the hospital and have 5 surgeries throughout the course of treatment.

No one likes to be sick and no one ever wants to have to be in the hospital. But, there’s a
difference at Connecticut Children’s. Connecticut Children’s knows what kids need to get
through the very long and difficult treatments that are required to save their lives.

As I underwent the often painful and exhausting treatment, they always tried to make me as comfortable and happy as possible. I spent most of my inpatient time at Connecticut Children’s on the eighth floor. All of the rooms at Connecticut Children’s are clean, bright, spacious, private, family friendly, and had an extra couch/bed or cot for a parent to stay overnight.

fullsizerender-00000007The amazing thing about Connecticut Children’s is that even though they are so good at making kids feel comfortable, they are even better at healing them and making them well. We are so blessed and fortunate to have this amazing hospital in our state.

Other children come from all over the Northeast to get cancer care in Connecticut. Doctors bring their children to Connecticut Children’s because the care is outstanding, and the services, technology and facilities are state-of-the-art.

In November of 2012, my left leg was amputated to ensure that all of my cancer was gone. This was a day that changed my life forever; however, not in the ways I had originally expected. My team at Connecticut Children’s helped me get back onto my feet quickly. Thanks to my fantastic doctors, physical therapists, and nurses at Connecticut Children’s, I began to take my first steps in a new direction as soon as I could.

I finished chemotherapy in May of 2013, and since then, with the help of Connecticut Children’s, I have skied, surfed, biked, ran, swam, sailed, and done things I didn’t even know were possible.

fullsizerender-00000002Thanks to the fantastic care I received at Connecticut Children’s, I am able to live a life filled with amazing experiences. Dr. Mike and the rest of the team at Connecticut Children’s not only saved my life, but when they gave it back to me, I discovered that it had been enriched and that I could live without limits.

Once again, I thank you for allowing me the opportunity to speak with you about my experience at Connecticut Children’s Medical Center. By making children well in our state, Connecticut Children’s continues to provide the world-class care that is critical to Connecticut’s future.

As you consider your priorities in planning your budget for the coming year, please remember the financial needs and good works of the incredible hospital that saved my life and the lives of so many other children in our state and the Northeast.

Thank you.

Connecticut Children’s Advocates: Concussions and Youth Athletic Activities

Below is testimony of Connecticut Children’s Medical Center to the Committee on Children regarding Senate Bill 769 An Act Concerning Concussions and Youth Athletic Activities Conducted on Public Athletic Fields.

Senator Moore, Senator Suzio, Representative Urban, members of the Committee on Children, thank you for the opportunity to share my thoughts about Senate Bill 769 An Act Concerning Concussions and Youth Athletic Activities Conducted on Public Athletic Fields.

We are David Wang, MD, MS, Medical Director and Carl Nissen, MD, from Elite Sports Medicine at Connecticut Children’s Medical Center. We are submitting testimony in support of this proposed legislation but would like to emphasize that when it comes to concussion education, it is critically important to consider what is appropriate education, who is best suited to deliver that information and how can it be done most effectively.

A concussion is a functional injury to the brain resulting from a traumatic hit to the head, face, neck or a blow to the body that delivers an impulsive force to the head. Concussions require prompt diagnosis and treatment to ensure a smooth and successful return to academics and athletics. As one of the most common sports injuries in school aged children, Elite Sports Medicine at Connecticut Children’s has developed a comprehensive, sports-related concussion program for adolescent and young adult athletes.

We are pleased that the State of Connecticut has taken concerns about concussions seriously over the past several years, enacting legislation that will help protect young athletes. We support Senate Bill 769 because any opportunity to expand awareness of and education about concussions in young athletes is a step in the right direction. Systems and protocols that help coaches, parents and athletes know the facts about concussions rather than the myths will help more kids stay safe and healthy. We would be happy to serve as a resource for you as you debate this proposed legislation.

Thank you for your consideration.

So much more than a toy…

By Rachel K., a grateful mom

15873173_709235219258211_5247297050631256053_nIf you have ever wondered what happens to all of the generous donations made to your local children’s hospital, this is a great example.

My daughter is 10 years old, born with multiple disabilities and autism. We spend a lot of time getting care from over 20 different medical specialists at Connecticut Children’s Medical Center. She usually gets to pick out a sticker (sometimes two if she worked hard) after all appointments at the hospital.

Some days the promise of a sticker is the only way she can hold her stuff together. On days like today, when an early morning, 20-minute routine hearing test turned into an additional 40 minutes, to include injecting molding putty into her ears after being told she now needed hearing aids – well, let me tell you just how much it means to a mom with a limited budget when the staff says, “You need to pick out a TOY for working so hard today!”

It is an incredible gift that goes way beyond just getting us out of Day Surgery or an appointment in one piece. It gives my daughter the opportunity to not focus on the many challenges she faces. She looked forward to putting this together all day.

So thanks to all those who think of our medically complex kiddos when giving. We really, truly love you.

Connecticut Children’s Advocates: Child Restraint Systems

Below is the testimony of Connecticut Children’s Medical Center to the Transportation Committee regarding HB 6956, An Act Concerning the Use of Child Restraint Systems.

Baby in Car Seat

My name is Luis Rivera, Program Coordinator, Injury Prevention Center at Connecticut Children’s Medical Center. I am submitting testimony in support of this proposed legislation because it would help protect children in the state by expanding the existing statute requiring child restraint systems in motor vehicles.

The mission of the Injury Prevention Center at Connecticut Children’s is to reduce injury and violence among Connecticut residents. To accomplish the mission of the Injury Prevention Center we implement four core activities: research, education and training, community outreach programs, and policy/advocacy. Child Passenger Safety has been a long held priority for our center.

Connecticut has made great strides in reducing motor vehicle injuries and deaths through public policy decisions that have served to reduce the risk of children while in the vehicle. The last major upgrade to Connecticut law regarding Child Passenger Safety was in 2005; requiring children to be rear facing in a car seat until the age of one and twenty pounds, and requiring children to remain in an appropriate child passenger safety seat/booster seat until 7 years old and 60 pounds.

Our hospital, and other child passenger safety advocates support updating Connecticut State law to include best practices regarding child restraints. This bill will require that children ride 1) in rear facing seats when they younger than 2 years old and weigh less than 30 pounds; 2) in a forward facing seat with a five-point harness when they are younger than 5 years old and weigh less than 40 pounds; and 3) in a car seat or booster seat until they are 8 years old.

This bill will also prohibit rear facing seats from being installed in a front seat of any vehicle that is equipped with an active passenger-side air bag. These recommendations are backed by the American Academy of Pediatrics. This bill would bring Connecticut’s law in line with current recommendations for child passenger safety and serve to improve the safety of child passengers. Thank you for your consideration of our position.