October 23, 2018

Texas Children’s Palliative Care Team (PACT) will host the first annual Candle Lighting Ceremony to honor the memories of sons, daughters, brothers, sisters and grandchildren gone too soon from this world.

The event will be held at the University of Houston’s Student Center South on Sunday, December 9, in conjunction with the Compassionate Friends Worldwide Candle Lighting Day, which unites family and friends around the globe in lighting candles for one hour at 7 p.m. in memory of children who have passed away.

All families whose children died and were patients at Texas Children’s Hospital are invited to attend the ceremony. There will be free parking, refreshments and childcare (for event attendees only, not for volunteers and staff working the event) for children 10 and under.

Families whose children passed away in the past three years received an invitation in the mail. There is also a Facebook event to invite families whose children passed away prior to 2016. Please share the Facebook event to spread the word. We want as many families to hear about the ceremony as possible. You can find the event on Facebook here or by searching “Texas Children’s Annual Candle Lighting Ceremony 2018.” Families must register to attend the event. To do so, they can go here.

Texas Children’s staff are needed to help plan the ceremony and volunteer to help the day of the event. If you are interested in volunteering, please click here.

“Losing a child is devastating and takes a toll on the whole family,” said Taryn Schuelke, the grief and bereavement specialist with the Palliative Care team. “We hope this ceremony will provide a healthy outlet of remembrance for families grieving the loss of their child, and to begin to heal from the pain and sadness they are going through.”

The Pediatric Advanced Care Team (PACT) is an interdisciplinary team comprised of Attending Physicians, Physicians in Training, a Nurse, Chaplain, Social Worker, Grief and Bereavement Specialist, Nurse Practitioner, Research Coordinator and Administrators who work together to provide excellent Palliative Care to patients and their families across the Texas Children’s Institution.

The team is available 24 hours a day, 365 days a year to provide care in either the inpatient or outpatient setting in partnership with other healthcare providers. The team also supports staff. Just last year, the program earned The Joint Commission’s Gold Seal of Approval for Palliative Care Certification, making Texas Children’s Palliative Care Program the first of its kind in Houston and one of only 90 across the United States to receive such a distinction. To learn more about the team, click here.

The Periwinkle Foundation and Texas Children’s Hospital have teamed up with H-E-B to offer limited-edition reusable shopping bags featuring original Making A Mark artwork created by children touched by cancer and blood disorders at Texas Children’s Cancer and Hematology Centers. Just in time for the holidays, the bags will be sold in various H-E-B locations in the Houston and McAllen area as an effort to help raise awareness about childhood cancer.

“We are proud to partner with H-E-B to create these unique grocery bags that spotlight two very special pieces of original artwork created by these young artists,” said Erin Locke, Community Programs Director at The Periwinkle Foundation. “Raising awareness about childhood cancer is so important, and we are very grateful that H-E-B has joined us in this initiative to help spread the word.”

The one-of-a-kind shopping bags highlight artwork from past Making A Mark artists, Bethany and Blanca. Lost in the Sunflowers by Bethany, 12, showcases a young boy in a cowboy hat admiring a vibrant sunflower in a sea of rich foliage while Untitled by Blanca, 15, depicts the different outlooks on life by showcasing the positive and negative through bright and dark colors.

“This project is meaningful to H-E-B Partners (employees) who have volunteered with The Periwinkle Foundation’s Arts in Medicine program at Texas Children’s Cancer and Hematology Centers,” said Lacey Dalcour-Salas, H-E-B Public Affairs. “We have showcased patient artwork through the Making A Mark exhibition at two of our store locations and look forward to sharing their inspiration with our customers while increasing awareness of childhood cancer with the creation of this reusable bag.”

Since 2001, The Periwinkle Arts In Medicine Program at Texas Children’s has brought unique opportunities for self-expression, empowerment and development of coping skills to patients and their families while enhancing the healing environment and treatment experience in a variety of settings including outpatient and inpatient care areas. Periwinkle’s Arts and Creative Writing Program culminates each year in Making A Mark®, a travelling exhibition of more than 350 pieces of art and creative writing by children and teens touched by cancer and other life-threatening illnesses.

These limited-edition bags will be available for sale at more than 30 H-E-B locations across Houston while supplies last.

October 8, 2018

Time is something every grieving parent wishes they had more of when saying goodbye to their child. Katie and Phillip Hurlbut would have loved to have had more time with their daughter Ella Grace, who passed away seven weeks after birth due to complications from an infection in September 2015.

“We felt rushed after she passed away,” said Katie, who is a nurse practitioner at Texas Children’s Pediatrics Humble Fall Creek. “We had very little time for our family to come and say goodbye to her.”

To extend the narrow window of time families have with a lost loved one, the Hurlbuts recently donated two Caring Cradles in Ella’s memory – one to the Women’s Specialty Unit at the Pavilion for Women and the other to Neonatal Intensive Care Unit at Texas Children’s Hospital The Woodlands.

The cradles use a cooling blanket to cool the baby’s body, which prevents any distressing physical changes and lengthens the preservation of the child by 24 to 48 hours. The cradles can be positioned in a private setting so that families not only have more time with their baby but can say goodbye in a private, dignified way.

“After we lost Ella, feeling her body change was one of the most upsetting things for me. Those changes made me realize how quickly she was slipping away from me,” Katie said. “As a grieving mother, I struggled knowing I only had a short amount of time to create memories with her. It’s our prayer for these Caring Cradles to give the gift of time to grieving families.”

Jenni Fair, patient care manager in the NICU at Texas Children’s Hospital Medical Center campus, said the cradles are especially helpful to mothers who might have been ill during delivery and unable to spend time with their child immediately after birth.

“Some mothers are literally physically unable to mourn the death of their child for a day or so until they are doing better themselves,” Fair said. “The cradles are very helpful in these situations.”

The Hurlbut’s donation of the Caring Cradles came a little more than a year after the grand opening of the Butterfly Bereavement Room at the Pavilion for Women. Devoid of medical equipment, the Butterfly Room is a nicely decorated nursery where families can separate themselves from the hospital setting and mourn privately. When they leave the room, families can take a purple bag filled with things such as a bereavement gown for their baby, a blanket and a book.

The Butterfly Bereavement Room also was an initiative spearheaded by the Hurlbuts.

“Our goal is to bring peace and comfort to other families going through the same painful experience we did – losing a baby,” Katie said. “We’re very thankful for the opportunity to turn something so tragic into something good. Ella’s life will continue to impact grieving families in a positive way for many years to come.”

September 26, 2018

 

As the largest children’s hospital in one of the fastest growing cities in the country, Texas Children’s high-quality care is always in high demand. However, due to high volume, getting patients and referring providers the answers and access they need in a timely fashion can be a challenge, which is why improving access has been a key focus at Texas Children’s in recent months.

Since the March 2018 launch of the Patient Access Initiative, several key improvements have been made to streamline processes for patients, including standardized clinic sessions and enhanced implementation of MyChart. On September 5, the Department of Surgery took a major step in improving access for referring providers with the launch of 1-855-TCH-KIDS, Texas Children’s new Provider Priority Line, available 24/7 exclusively for referring physicians and advanced practice providers.

“The Provider Priority Line creates a pathway for referring providers to have easier access to Texas Children’s surgeons for questions about patients,” said Dr. Sohail Shah, surgical director of Perioperative Services at Texas Children’s. “We want to make ourselves available to referring providers to assist them in the care of children across the state of Texas, and ultimately the region.”

Previously, if a referring provider had a question for a Texas Children’s surgeon, the communication pathway might route them across numerous Texas Children’s campuses, offices, clinics, and health and specialty care centers. This fragmented approach had the potential to result in multiple call transfers, which could contribute to delayed response times. Now providers can simply call the Provider Priority Line and reach on-call attending surgeons for specialties including Neurosurgery, Ophthalmology, Orthopedics, Otolaryngology, Pediatric Surgery, Plastic Surgery and Urology.

Department of Surgery leadership partnered with Texas Children’s Mission Control and Telecommunications Services to develop the line’s efficient communication flow.

  • When a referring physician calls the line, the call is triaged through Mission Control.
  • Mission Control gathers patient information, and determines the specialty area needed and whether the call is urgent or non-urgent.
  • The call is routed to the on-call attending surgeon at the Texas Children’s campus nearest to the referring provider’s location.
  • The attending surgeon calls Mission Control and is connected to the referring provider on a recorded line, which closes the communication loop.

Early metrics have shown rapid connection times between providers and on-call specialty surgeons, with responses for urgent calls occurring in 15 minutes or less. Initial referring provider reactions have been overwhelmingly positive.

“An early call we received was from a physician at a regional emergency center who had a question about a 14-year-old patient,” Shah said. “He was pleased to be able to speak directly with a pediatric surgeon and relay a care plan to the family immediately afterward. He said the usual course of action would have required an opinion from a local adult surgeon, which often led to a delay in definitive care.”

The Provider Priority Line will not only create easier access to Texas Children’s pediatric surgical expertise, it will also make interactions with providers more customer focused.

“Dr. Shah and his team, in collaboration with Mission Control, have developed a system that delivers an enhanced level of service for our referring providers, who very much appreciate help and advice when seeing pediatric patients who are dealing with complex problems,” said Texas Children’s Surgeon-in-Chief Dr. Larry Hollier. “As the largest children’s hospital in the country with the largest number of surgeons and operations, we should be able to provide them with the help they expect from us. With the Provider Priority Line, we can show them we’re committed to meeting and exceeding their expectations.”

In the near term, the service will be promoted to referring providers across the region with the ultimate goal of routing all such referring provider calls through the Provider Priority Line for a more streamlined experience. The long-term goal will be to extend the service to emergency centers and urgent care facilities as well. And in addition to 1-855-TCH-KIDS, there is also a local number available: 832-TCH-KIDS.

Learn more about how Texas Children’s is improving access.

This week’s Radio Lollipop broadcast was extra special as Houston Texans offensive tackle Kendall Lamm, center Greg Mancz and Texans Analyst John Harris joined in on the fun! They played games with patients and their families, decorated football helmets, danced to patient-requested songs and spent time in the Kids Own Studio answering questions from patients and families.

Radio Lollipop is a fully-equipped, on-site radio station at Texas Children’s that broadcasts to patients’ rooms via the hospital’s television system. It is a volunteer-driven program that involves children in play and activities, using the sounds of radio to help stimulate the children’s imagination. Volunteer deejays create excitement among patients by playing Top 40 hits, taking call-in requests and putting kids “on-air” to actively participate in the magic of radio. Each on-air broadcast also features games, art projects, storytelling and contests in which kids win prizes.

Texas Children’s is the Official Children’s Hospital of the Houston Texans. To learn more visit texaschildrens.org/texans.

September 18, 2018

As part of National Childhood Cancer Awareness Month, Texas Children’s Bone Marrow Transplant Unit (BMT) was transformed for a few hours last week into a full-fledged parade route – music, costumes and all.

The Lace Up 4 Life event – hosted in part by Be The Match, which manages the largest and most diverse marrow registry in the world – began in the inpatient portion of the unit with patients dressed in super hero capes and costumes parading downs the halls with staff members by their side and cheering them on.

“We enjoy this event every year,” said Dr. Robert Krance, director of the Pediatric Bone Marrow Transplant (BMT)/Stem Cell Transplant Program at Texas Children’s Hospital. “It’s a time for us to celebrate the lives of those who have been saved by a bone marrow transplant, and to remember those who are still racing to find a match.”

After several laps around the inpatient unit, patients retired to their rooms while the parade continued to the outpatient portion of the unit, pausing for a special announcement from Hope Guidry-Groves with Be The Match.

“Today, 16-year-old Jacob Bustamente is going to meet his donor, Heather Wallace, for the very first time,” Guidry-Groves said. “We are so fortunate to be a part of an organization that makes moments like these possible.”

Jacob is a patient at Texas Children’s and so is Wallace’s son. When they first laid eyes on one another they quickly embraced in a long, emotional hug.

“Thank you so much,” Bustamente said. “You are such a blessing.”

Wallace told the audience that everyone should join the marrow registry. “There’s no reason not to,” she said.

Texas Children’s Cancer Center has a premier bone marrow and stem cell transplantation program. Our state-of-the-art, 15-bed inpatient transplant unit is among the largest of its kind in the Southwestern United States and focuses exclusively on transplantation. The Bone Marrow Transplant Clinic performs over 100 transplants per year.

Texas Children’s works closely with Be The Match to find donors for our patients. Learn how marrow donation works, the steps of a patient transplant, steps of donation, and factors that can impact the likelihood of finding a match here. A marrow transplant may be someone’s only hope for a cure.

Imagine you’re the parent of a newborn with an arm injury. During your admission you’re told not to move the arm and to protect it all times. Now imagine coming back for your clinic appointment and hearing that it’s time to start moving the arm at home – unsupervised. For parents of children with brachial plexus birth palsy, this moment can be daunting.

Brachial plexus birth palsy occurs when there’s a stretch or tear in the bundle of nerves known as the brachial plexus, located near the neck and upper arm area. These injuries may cause weakness, pain, sensory loss and functional impairment. Sometimes the nerves need time to recover, anywhere from a few days to a year. Other times surgery might be required. Regardless, a focus on treatment during the waiting period can help prevent the shoulder joint from becoming stiff. The only way to keep the joint loose is through passive exercises, which must be performed early and often by the patient’s family.

“If we can find a way to keep these shoulders loose, we can eliminate many of the problems we see down the road,” said Dr. Chris Pederson, head of Texas Children’s Pediatric Hand and Microvascular Surgery programs. “Unfortunately, for a lot of parents performing the exercises can be an intimidating task.”

To help empower parents, Texas Children’s brachial plexus clinic recently teamed up with engineering students at the Oshman Engineering Design Kitchen at Rice University to develop a model that allows parents to practice movement exercises in clinic before performing them on their children at home. The project was part of an ongoing collaboration with Rice begun in 2014 by Texas Children’s Brachial Plexus Clinic Coordinator James Northcutt.

“I originally pitched the idea for the brachial plexus model to the freshman design class at Rice in the fall of 2017,” Northcutt said. “Using the model, I wanted parents to be able to identify the different parts of the shoulder and shoulder blade and feel the difference between a stiff shoulder and a healthy shoulder. And ultimately, I wanted to help alleviate the anxiety parents feel about moving their child’s arm by giving them the opportunity to practice the exercises on the model first.”

Northcutt met with the students monthly to serve as clinical lead on the project, providing information about anatomy, biomechanics, caregiver needs, therapy concerns and overall device application. Less than a year later, design team “Can’t Brachius,” produced a professional and well-functioning prototype. But it needed to be tested by parents. Mayra Oliver was the first.

When she was first told she’d need to perform exercises on her infant son, Raphael, Oliver was nervous and worried. But a demonstration of the model and the opportunity to use it herself had her feeling much more confident.

“When I first knew that Raphael was hurt, I was scared I’d do the exercises wrong and hurt him or somehow make his injury worse,” Oliver said. “Being able to feel the different parts of the shoulder on the model and then on Raphael, and then feeling the way the healthy shoulder should move freely, as opposed to the stiffness of an injured shoulder, was very helpful. I think this model will be very useful in helping families feel less nervous about doing the exercises.”

Using a survey developed in conjunction with the Rice design team, Northcutt will begin conducting a randomized control study over the coming months to determine the device’s efficacy both in educating families and in preparing them for the performing the exercises at home.

“I look forward to finding out more about our parents’ needs in helping these infants grow up to function at the highest level,” Northcutt said. “This project represents an attempt to improve patients’ futures by equipping parents to be informed, active care team members.”

The Brachial Plexus Clinic is part of Texas Children’s Brachial Plexus Program, which comprises plastic surgery, orthopedic surgery, physical medicine and rehabilitation, and occupational therapy. The clinic provides comprehensive care for brachial plexus injuries including specialized assessment, developmental and functional screening, primary nerve surgery when indicated, secondary orthopedic surgery for the shoulder and lower arm when indicated, and preoperative and postoperative care in the therapy setting. The brachial plexus team provides high-level, evidenced-based care, utilizing ultrasound to monitor shoulder integrity in infants recovering from brachial plexus injury, providing specialized splinting for prevention of joint contractures in the arm, and implementing best surgical practices for primary nerve and secondary orthopedic procedures.