August 7, 2014

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On the 12th floor of West Tower, in an eight-bed rehabilitation unit, the rehab team including therapists, nurses, neuropsychologists, child life specialists and physicians,  are helping children relearn how to do those things that we all take for granted; walk, talk, stand, eat, bathe and play. It’s the daily tasks that they once knew well but after being impacted by a disease or accident, these children must relearn the basics. Just two years after opening its doors, the unit has seen 262 patients many who, with intensive rehabilitation, progressed from little or no functional independence to actively participating in their lives outside of the hospital walls.

Watch a short video explaining why we opened the unit in May of 2012

Now, the unit is celebrating a major milestone after receiving the highest level of accreditation from the Commission on Accreditation of Rehabilitation Facilities (CARF). It is the only pediatric inpatient rehabilitation facility in the state of Texas and one of only 31 worldwide with this level of accreditation. CARF international is an independent, nonprofit accreditor of health and human services.

“We built this unit with the understanding that we wanted to be leaders in the pediatric rehabilitation community and we wanted to lead in the nation,” said Dr. Christian Niedzweicki, medical director of inpatient rehabilitation. “We wanted to be a center of national prominence and CARF is the gold standard.”

The CARF accreditation means the rehab program has demonstrated significant conformance with at least 1,500 standards signifying quality care for children with multiple disabilities in the inpatient rehab setting. The CARF accreditation survey team who conducted the survey  interviewed physicians, nurses, therapists, patients and patient families as well as system-wide organizational representatives to determine the level of care and service that was being provided.. Accreditation is predicated at least in part on how well the rehab program addresses the individual needs of the patients and families.   Texas Children’s inpatient rehabilitation team creates an individualized and family centered plan of care for each patient based on their needs and levels of disability and ability. The rehab team sets daily, weekly and discharge goals unique to each child and their levels of progress. The child’s every activity from waking up in the morning and brushing their teeth, eating breakfast, attending therapy sessions, school, playing and each step until bedtime is dedicated to their recovery.

“Our team is passionate and dedicated to helping each child and their family achieve the best possible outcome,” said Shelley Ellison, director of physical medicine and rehabilitation. The team members, including the patients and their families, work collaboratively to achieve the identified goals throughout the day and night through hands-on intervention as well as ongoing progressive education to patients, families and others.

The program’s newest recognition is just the beginning of an on-going process of continuous performance and quality improvement. Niedzwecki said most programs don’t attempt accreditation until they’ve been open for at least five years. The Texas Children’s Hospital rehab unit submitted their letter of intent to be surveyed for accreditation at just 18 months.  The rehab team works collaboratively to embrace the culture of ongoing improvement while striving to be the best in the country.

“We will continue to constantly reassess the input from our patients and their families to continue improvement,” said Niedzwecki. “This accreditation means we are doing what is right for the patient and are now recognized by an international accrediting organization that helps us become a leader in the field.”

Niedzwecki and Ellison both emphasize the commitment of the entire IRU team and numerous others across the organization that made this major accomplishment a possibility.

August 5, 2014

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It was off to camp for several members of Texas Children’s pediatric neurology team and their patients. They made the trek to Camp For All, a beautiful, barrier-free recreational facility in Burton that helps children with special needs experience the thrill of camping and nature, just like normal kids their age.

Each summer, Camp For All hosts Camp Spike ‘n’ Wave, a weeklong camping expedition for children and teens with epileptic seizures. They build new friendships, unleash their independent, adventurous spirit, and focus less on their disability.

“We don’t want their medical condition to completely define who they are,” said Dr. Gary Clark, the camp’s lead physician and chief of Neurology and developmental neuroscience at Texas Children’s. “Wheelchair bound or not, every child can accomplish just about anything they set their minds to.”

Unlike traditional camps, Camp For All has no barriers. The entire 100,000 square foot facility – including cabins, bathrooms, showers, and sidewalks – are completely wheelchair accessible. The sidewalks are wide enough to accommodate side-by-side wheelchairs. And, every child is able to participate in all activities, regardless of the severity of their disability. If a wheelchair bound child wants to canoe, the child is placed in a sling and lowered into the canoe with a crane so they can explore nature on the water, just like their able-bodied peers.

“I will never forget how one of our wheelchair bound patients got to go on the big swing, which is essentially a big zipline,” said Sterling Myers, a camp volunteer and pediatric neurology nurse at Texas Children’s. “It made me smile to see the campers cheer each other on at every activity and boost each other’s self-esteem.”

More than 120 children with epilepsy participated in adrenaline-pumping activities like rockwall climbing, zip lining, horseback riding, rope courses, archery, biking, fishing, canoeing, swimming, karaoke, and arts and crafts.

8614Campinside640“It was great to see their fearlessness,” said Dr. Shannon Dicarlo, a pediatric neurology physician and former fellow at Texas Children’s. “They didn’t let their epilepsy get in the way of going about their lives, making friends, and having fun.”

Behind the scenes, our Texas Children’s medical team made sure the kids received superior care away from home. Every child at camp required medication for their seizures. Texas Children’s pharmacists filled and labeled prescriptions onsite according to the patients’ electronic medicine administration record generated at the hospital.

“When you think about it, we operated a mobile hospital right here at the campground,” said Clark. “It’s all about meeting our children’s needs.”

Camp Spike “n” Wave provides unique training opportunities for fellows to observe how their clinical decisions can impact their patients. It’s not every day that physicians see patients have seizures or struggle to swallow a fistful of pills. When these happen, highly trained camp counselors, along with Texas Children’s physicians and nurses, spring into action.

“This year, we trained a 6-year-old how to swallow pills,” said Dr. Geetanjali Rathore, a pediatric neurology fellow at Texas Children’s. “He shed a few tears the first time, but by the end of the week, he became a champ at swallowing pills.”

Camps, like Camp Spike ‘n’ Wave, wouldn’t be possible without the diligent efforts of Texas Children’s own, Dr. Robert Zeller, chief of the Blue Bird Circle Clinic, who collaborated tirelessly with other physicians and organizations to create Camp For All in 1993.

“I had a patient with epilepsy who couldn’t go to camp because camps wouldn’t accept children with this condition,” said Zeller. “This prompted me to develop a camp for disabled children who can discover life without barriers. It’s my way of giving back to my patients.”

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By Dr. Binal Kancherla

All parents run across sleep dilemmas with their child at some point. If it doesn’t happen at 5 days, 5 months old or at 5 years old, it will happen! When my two sons – now ages 5 and 3 – were younger, I would place them in their crib while they were drowsy so they could learn to self-soothe. This method, along with establishing bedtime routines early on, seemed to work well for my family…most of the time!

Recently, I came across an interesting study in Pediatrics, titled, “Infant Sleep Machines and Hazardous Sound Pressure Levels.” While sleep-inducing white noise machines can be a miracle product for exhausted parents, this study may have left many families worrying about whether sleep machines increase a baby’s risk of hearing loss.

The study proposes that during the early development of a baby, their auditory pathways are sensitive and require the appropriate auditory input. Appropriate input means sounds, such as human speech, that are regular in the baby’s environment and usually produced with an irregular frequency. White-noise machines expose babies to a noise of a very consistent frequency over long periods of time. According to the study, in the long-term this disrupts the normal processing of frequency in the brain therefore affecting the child’s ability to hear and process sound intensity.

Researchers tested the maximum noise levels in 14 infant sleep machines at three distances. All but one exceeded the current recommended noise limit for infants in hospital nurseries, even at the farthest distance.

I think the study raises some concerns, but it doesn’t provide specific evidence that these machines lead to hearing problems. Although white noise machines may be successful in lulling a baby to sleep, I believe it is important for parents to establish proper sleep patterns. This can be done by starting a bedtime routine early in infancy, placing the baby in his or her crib while drowsy but not fully asleep, and not allowing the infant to fall asleep while taking a bottle or nursing.

For those new parents out there who opt to use the white-noise method, it’s probably a good idea to position the machine farther away from your baby’s crib, more than the 6 ½ feet tested in the study. Other tips include keeping the volume set on low and only operating the machine for a short duration of time.

Ultimately, each family and each baby is different, but one thing is always true – sleep is necessary to function, to live, for both parent and child. So, find something that works for your family and consult your pediatrician with any specific concerns.

July 22, 2014

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“Please don’t hurt me. Heal me, and be nice to me.”

In that order, those are our patients’ most basic needs. Preventing errors and not harming patients are the most important responsibilities of every Texas Children’s employee.

Organization-wide Error Prevention Training launched last week to help ensure every one of us is equipped with the information and tools to keep patients safe.

This video explains why preventing errors is so critical and how each of us can make care safer at Texas Children’s.

“We take care of the sickest of the sick at Texas Children’s, and when you’re taking care of that many severely ill children, it’s a real challenge,” said President and CEO Mark A. Wallace. “Everyone recognizes that creating a safe environment – focusing on safety and error omission – is job one. Doing no harm to our patients is first and foremost.”

The Error Prevention work launched as part of the CareFirst initiative, began in January. CareFirst is primarily two things: an intense study of our core clinical areas at the main campus and an aggressive, strategic plan for how we will address our most crucial needs in those areas. The initiative is focused on the main campus Emergency Center, Critical Care units, and the Operating Rooms/PACU, because these areas provide the highly complex services that our most critically ill patients need. While CareFirst centers around expanding to better accommodate the critical needs of these high patient volume areas, its purpose is greater.

“If we don’t have the right environment, the right tools, the right people or the right structure, then it becomes very challenging to deliver the very best possible care – the safest care,” said Surgeon-in-Chief Dr. Charles D. Fraser. “Systems under duress – whether it be in the operating room or the emergency room or the intensive care unit – where there’s duress, then people become fatigued or distracted, and that’s an environment that is ripe for an error.”

The staff and employees involved in CareFirst work are vetting options to create the physical space and support needed in the core patient care areas. Combined with the Error Prevention training that kicked off last week, CareFirst ultimately will advance our efforts to ensure an optimal environment to receive and give the safest possible care.

“CareFirst is about making a promise to every child and woman who comes here that we will not harm them and equipping our facilities to ensure we keep that promise,” Wallace said. “It is far more comprehensive and much more important than expanding and building. It’s about doing what’s right for our employees and medical staff, and most importantly, what’s right for our patients, their families and their care. Ultimately, it’s about putting the care and safety of all of our patients and our people first.”

Error prevention training began in Hematology/Oncology in mid-July and will continue throughout other clinical areas over the next several months. In addition, online training will be provided for all non-clinical employees. Ultimately, every staff member and employee within Texas Children’s will receive error prevention training.

“My wish, my hope for every one of the 10,000 employees that will be going through training, that will hear about CareFirst, is that they stop and think about their individual role in supporting and delivering on zero harm,” said Chief Nursing Officer Lori Armstrong. “Everyone plays a role.”

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Houston has its share of sporting events but hosting the Transplant Games of America was particularly special for Texas Children’s. As one of the lead sponsors, the hospital supported the games by promoting them, encouraging employees to volunteer, as well as organizing participation by patients. President & CEO Mark A. Wallace joined other leaders from the medical center at the opening ceremonies to carry out the official game flag that had traveled the country and been signed by transplant donors and recipients.

For Liver Transplant Coordinator Sarah Koohmaraie, the Transplant Games of America was a very special event. Koohmaraie was participating for herself, her father and her patients. To know how much this means to Koohmaraie, you would have to go back a few years.

In December of 2007, a little more than a week after graduating from nursing school, Koohmaraie went into surgery. Just months before that day, she found out her father was in need of a kidney transplant. While he was hesitant to let his daughter be the donor, Koohmaraie said she insisted.

“I kind of went behind his back and got tests done and made sure it would work out,” said Koohmaraie. “I knew I wanted to be the donor.”

The transplant was a success and a couple of months later, Koohmaraie was back at the hospital, this time as a transplant nurse. She moved to Houston in 2012 and began her position as a transplant coordinator at Texas Children’s. She said when she found out through work that some patients were participating in the transplant games, she knew she wanted to join them. She felt the camaraderie as she participated in all of the events.

“It was neat to see all of these patients who could have been on death’s door and now they’re doing exactly what I’m doing,” said Koohmaraie. “It was also nice to have my dad out there cheering me on and getting to meet other recipients.”

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Team Texas consisted of 300 participants, patients and donors from across the state, including many former Texas Children’s patients, who took part in athletic competition and raised awareness for organ donations. The team had an impressive 450 registered supporters. The oldest participant from Texas was 83 year-old John Cugini and Parson Blue Herrington was the youngest at just two years old. The event brings to light the need for organ donors and brings together transplant patients, donors and families from all over the country. Forty-four teams and thousands of participants competed for gold this year with some states combining to form a more robust team. The games take place every year, going to the world stage in the World Transplant Games every other year.

“It was nice to raise awareness for donation, every one of those people out there wouldn’t have been able to be out there if someone didn’t donate,” said Koohmaraie. “You got to see people who were once very ill and now athletically fit with someone else’s organ in them and you would never know it.”

Team Texas brought home around 104 medals with 63 gold, 26 silver and 15 bronze. Koohmaraie competed in the Cycling 5k and 20K as well as the 1500 meter. She came home with the gold in all three.

See the photo gallery from the Transplant Games of America pep rally below.

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When Kansas native Parker Flax was just three-months-old, he developed a fever, rash, conjunctivitis and cold-like symptoms that prompted his parents, Jessica and Daniel, to take him to the pediatrician. He was quickly diagnosed with measles, but after blood work ruled out the initial diagnosis, he was sent home. Parker then began developing extremely high fevers, which hovered around 106 degrees and would not subside with medication. Following a bigger spike in his temperature, his parents took him to a physician in nearby Kansas City who performed a spinal tap and diagnosed Parker with bacterial meningitis. He was admitted to the hospital and given antibiotics. Following further testing, meningitis was ruled out, but the physicians did not know what was causing Parker’s symptoms.

The usually happy, carefree baby continued to have fevers and was oftentimes inconsolable. On September 18, while at home with Parker and his brother, Jessica had to administer CPR on her young son who had collapsed and wasn’t breathing. She knew in that instant that all of Parker’s previous symptoms contributed to this frightening episode. He was admitted to the hospital and the family finally received a diagnosis – Parker had suffered a heart attack and had Kawasaki disease with 100 percent blockage of the right coronary artery as well as dilation of the left coronary artery. The physician told the family he had never seen a patient so young with this diagnosis and sought advice from cardiologists around the country. When he received twenty-two different answers from twenty-two different cardiologists, the Flax family knew they had to take matters into their own hands and find the best possible treatment for Parker. Jessica went online and found Parker’s pediatric cardiologist, Dr. Carolyn Altman, at Texas Children’s Heart Center.

At the end of May, pediatric cardiologist Dr. Caridad delaUz, implanted the 19-month-old with the Reveal LINQ Insertable Cardiac Monitor.

“Parker was the first pediatric patient in Houston, and among the first in Texas, to receive LINQ cardiac monitoring device,” said delaUz. “I’m so glad we’ve been able to give his parents the peace of mind they’ve desperately yearned for since Parker was a baby.”

The device, released in February, is smaller than a key and wirelessly monitors Parker’s heart rhythm with specific parameters set by Dr. delaUz. The monitoring device inside Parker’s chest stores the information which is wirelessly communicated to a hub at his bedside. The device sends transmissions of any abnormal rhythms automatically to his care team here in Houston. The minimally-invasive procedure took less than ten minutes and allows Jessica and Daniel to sleep easier each night because they know Parker is being monitored by the Texas Children’s Heart Center team 24 hours a day.

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Each year, around 5,000 children are admitted to the Texas Children’s Hospital Pediatric Intensive Care Units. These are the patients who require the highest level of medical care. Until just a few months ago, a portion of our admissions were children who were transferred from West Campus because of their need for a higher level of care which was not yet available in the community hospital.

In March, partially funded by a generous $1million donation from the Lauren and Lara Camillo Family Trusts, West Campus opened an eight-bed PICU to meet the evolving needs of patients in the community. The family, who’s known in West Houston for their thriving business in homebuilding, Legend Homes, made the donation to create the much-needed intensive care unit which will help care for the growing number of cases being seen at West Campus. This was the second $1million donation from the family, who also donated to the construction of West Campus, said they are giving back to the community that has helped them thrive. Only a few months after opening, Chief of Critical Care Dr. Lara Shekerdemian said it is meeting a great need that has been present for a long time. Already, there has been a steady increase of patients using the West Campus PICU with an average daily census of anywhere between five and seven and an 80 percent occupancy just a few months into opening.

“We’re delivering the right care in the right location for all of our patients who require critical care,” said Shekerdemian.

The unit is staffed by intensive care physicians and advanced practice providers who are all on Faculty at Baylor College of Medicine, Section of Critical Care. All of our caregivers, including our nurses, have experience and training at main campus PICU. Some of the West Campus PICU nurses transitioned from Main Campus and others were recruited from other intensive care units. The new positions were met with enthusiasm and there was no lack of interested individuals who were excited about working in this new setting. Shekerdemian stresses the care at West Campus is equivalent to the main campus intensive care with the same guidelines and protocols, and a highly trained team of providers. The addition of the unit will impact the ability of the West Campus facility to perform more complex surgical procedures, and to admit more patients from the Emergency Center. The unit is not only helping the great need in West Houston, it ensures that we have more space to care for the sickest children across the City.

“We have had to turn down patients at Main Campus needing our critical care services as recently as last winter before the opening of the West Campus PICU,” said Shekerdemian. “This is something that we are very uncomfortable with; we feel a moral discomfort at having to deny admission to any child that’s critically ill.”

Dr. Moushumi Sur, medical director of the West Campus PICU, said this is a situation we hope to ease this winter, with a proposed plan to increase staffing and beds.

“The number of transfers from the Emergency Center at West Campus and from other hospitals in the area to the Main Campus ICU has decreased since we opened the new PICU,” said Sur. “We’ve made an impact in terms of taking care of patients at the same level in a community setting. This is exactly what we hoped.”

Dr. Shekerdemian said while the transfers have decreased, the Main Campus PICU has not seen a major decrease in patient volumes. In fact, she said a proportion of the patients in need of intensive care at West Campus are new to the Texas Children’s Hospital system. As for the build out of the unit at West, Dr. Sur said it’s a breath of fresh air.

“There is more natural light in the unit which helps overall morale not only for our staff but for the patients and their families,” said Sur. “The visibility is also improved and enhanced. The ability for the nurses to have their eyes on their patients even when they’re outside the room is extremely important.”

With an already busy West Campus PICU, the critical care team is planning for the future. Sur is on a committee for The Woodlands Campus to plan an intensive care unit, making sure the facility is built to support the opening of a PICU within the first few months of the campus’ opening.