By Ashley Pagenkopf, MS, CCLS, Child Life Specialist at Cook Children's

It’s amazing to see what one bright-colored toy or fidget can do to change the feeling in an exam room. Recently, I have started grabbing something to take to patients when I get a call to help prepare them for a procedure or support them.

Typically, I grab something small – a pop-it, a Hot Wheels car or something else that I can offer them upon entering the room. You can see kids’ eyes when you walk into the room. They are scanning your hands to see why you came and what you are there for. They are really looking for a SHOT!

When they scan my hands, they often see an iPad and some small toy or fidget of some kind, and their face melts a bit. They soften. Why does this happen? Because play is magical…

Play is the act of engaging in something for fun or enjoyment. We know that play is universal and crosses many cultural and language barriers. In fact, child life specialists would say that play can be a language of its own. Play is a pillar of child life practice, and we could not engage patients and families without it.

We see the expression of a child’s emotions and experiences being worked out in play often more than words. We also know that play is an integral part of cognitive, speech/language, social/emotional, and gross and fine motor development.

This makes play essential in a pediatric health care setting. It is our goal to continue the normal growth and development of children even during stressful experiences like hospitalizations, traumatic experiences and chronic illnesses.

There are several ways that we utilize play in the health care environment. We use play for normalizing the environment, preparing and teaching the patient and family about medical procedures, and for processing their experiences.

Normalizing the Hospital Experience

Developmentally appropriate play is the most natural aspect of childhood that kids know and understand. We use developmentally-appropriate play to help normalize what is otherwise a very stressful place. Just as I referenced in the story above, walking in with a toy or a stuffed animal immediately changes the atmosphere.

Basic things like coloring, Play-Doh and bubbles are the framework of breaking barriers with kids in this seemingly very scary place. You will notice in many exam rooms around the hospital and medical center that there are eye-spy art pictures for children to engage in while they wait.

Each age group plays differently and has different needs. When I would meet kids as an inpatient child life specialist, I would often ask kids what they loved to do if they were stuck in bed at their house. We want to start with their favorite things and what brings the most comfort. Thankfully, we are able to provide play opportunities to every kid that enters our doors in some way.

Through hospital allocations and community donations, play is always possible. I’ve played countless hours of Barbies and Battleship with kids. UNO tournaments were a norm in our inpatient playroom. Nerf guns and over the door basketball hoops can bring incredible laughter and smiles even on the worst of days.

Even in the NICU, our babies experience play. We make sure that babies have stimulation at the bedside with mobiles and textured lovies, and jumpers are provided as they are able.

Developmentally appropriate play is just a standard part of childhood. We want to meet the basic needs of children in the health care environment, too. Play is essential.

Processing - Therapeutic Play

While a large part of the play within the health care environment is just for fun, we also spend a lot of time playing with purpose. This is therapeutic play. Therapeutic play can be led by a patient (non-directive) or led by the child life specialist (directive) with the goal of emotional expression, medical teaching or to be physiologically enhancing (blowing bubbles to encourage deep breaths) (Koller).

Some could argue that all play is therapeutic allowing a child to express themselves and process their experiences. However, therapeutic play within the hospital environment is vital. These type of play experiences allow children to build their resilience while developing and practicing new coping skills. We utilize specific medical play often which is discussed in detail a little later.

We also provide art and music opportunities through our CARPE program and other play modalities for patients to express their feelings and work out their thoughts. Remembering that play is a language, we can learn a lot about our patients and families by watching them play or engaging in play with them. These things allow us to better serve our patients and families and develop care and coping plans during their stay.

Preparing for Procedures or Teaching a New Diagnosis

We also utilize play when preparing children for procedures or teaching them about a new diagnosis. This is a type of therapeutic play with a very specific purpose. We often utilize a stuffed animal or doll to first demonstrate a procedure. We may tie a tourniquet around a stuffed animal’s arm so that a child can see what that looks like. We frequently place IVs in dolls and stuffed animals so that the child feels less alone in their experiences while also seeing the steps and understanding the process.

As child life specialists, we facilitate what is called medical play. This may be as simple as a toy doctor’s kit to more complex play using real medical supplies while teaching with a patient and/or sibling.

One of my favorite activities is using an insulin syringe to inject dye into a medical play doll. This ultimately makes a tie-dyed doll, but it also allows a patient to get comfortable with the needle and syringe (under the supervision of a child life specialist).

At Cook Children’s, we host a Kid’s Clinic for patients to come down for a specific time just to do patient-led medical play. Patients are given a medical play doll and then are invited to use medical equipment on their doll. Patients place IVs, casts, and more.

This play often mimics their own experiences while giving them an opportunity to get more comfortable with medical equipment and process their feelings around their own story. Children not only learn from this type of play, but they leave feeling more empowered in their own medical care.

As child life specialists, play is not only essential but also at the forefront of every interaction with a patient and family. Cook Children’s recently lost a precious child life specialist. Amy Johnson was a child life specialist extraordinaire. As we were attending her funeral, many past patients’ families shared stories of Amy.

I was profoundly impacted that what the patients and parents remembered most fondly about Amy was her ability to PLAY – nerf gun wars, water gun fights and more! She had SO much fun during some of the worst moments, and this is the memory that the patients and families had ingrained in their hearts forever. Play is not only essential, but it also changes the environment and allows children to be the very best versions of themselves!

“This topping out ceremony is a symbolic moment of the progress we have made thus far on our new health care campus in the Town of Prosper. Serving families across Collin and Denton counties and beyond, our new medical center is designed with the child in mind,” said Rick W. Merrill, president and CEO of Cook Children’s. “When families enter these doors they can expect an experience that’s completely centered around them. The care that will happen inside and outside these walls will be done with great care and compassion, keeping in mind every need of the child.”

The new inpatient pediatric hospital, of which the final beam was just placed, will open in phases. Phase I will include a 10-bed emergency room with capacity to grow to 22 rooms as needed. The pediatric intensive care unit will have 10 beds and there will be 14 medical/surgical beds. The hospital will also have four operating rooms, three procedure rooms, an infusion center, pharmacy and lab. In addition, Cook Children’s Teddy Bear Transport will provide medical transport services.

“The topping out event marks a major milestone in our Promise to improve the health of every child,” said Kevin Greene, assistant vice president and administrator of Cook Children’s – Prosper. “Through our comprehensive network of urgent care, primary care and specialty care clinics, our Cook Children’s team has already seen more than 160,000 patient visits in the northern region since opening our doors in October 2019. Come December 2022, Cook Children’s Medical Center - Prosper will be the next chapter in our commitment to bring world-class pediatric care close to home for so many of our patients and families.”

Because Cook Children’s offers so many different services, families don’t have to worry about keeping track of medical records. Our integrated system allows physicians from across the network to access patient records, and even pick up the phone and consult with one another to determine what is best for the patient. Telehealth appointments are another convenient feature offered at the new campus. Using the latest telehealth technology, video equipment and a 65-inch TV, patients at the Prosper campus are able to be seen by their physicians at Cook Children’s in Fort Worth.

Specialty services currently available at Cook Children’s – Prosper include:

• Cardiology
• Ear, Nose and Throat
• Endocrinology
• Gastroenterology
• Hematology and Oncology 
• Nephrology
• Neurology and neurosurgery 
• Pediatric surgery 
• Pulmonology
• Sports Medicine 
• Urology 
• Psychology 

Cook Children’s will be hiring more than 120 positions for the Prosper medical center, which is expected to open in December 2022.

**You may be wondering why a tree adorned the final beam. The tree is a symbol that signifies construction has reached the sky without the loss of life or injury and is good luck for the future inhabitants of the building. 

The audience can’t see the battle that may be raging inside her as she moves to the music. At any given moment, a clump of red blood cells—misshapen by Sickle Cell Disease (SCD) into crescents that can block blood flow and oxygen from reaching parts of her body—may cause an acute “pain crisis” in her chest or back or legs or arms. The pain has been described by some SCD patients as feeling like being stabbed repeatedly with knives or having bones inside the body broken over and over again.

It can be intense. But, still, Kambri dances on.

“It helps as a distraction,” the 12-year-old says in a soft voice during a recent telephone interview. “I’m not really thinking about the pain.”

Brandi Gaut, Kambri’s mom, says her daughter doesn’t “wear the pain on her face” and doesn’t want to let down her dance team. She remains active, even when it hurts, her mom says.

“One thing about Kambri—you know, they use the term ‘sickle cell warrior’—I would definitely use that to describe my daughter. She’ll go to dance (class) hurting,” Brandi says. “And she’ll be like, ‘No, I want to dance.’ The hematologist always told us, let her do what she feels like she can do. Let her make the decision.”

“There have been times when she has danced in a recital, and as soon as we finish the recital, we literally leave there and go straight to Cook Children’s. She’s done that two or three times,” says Brandi, a Crowley resident who sits on the board of Carol’s Promise Sickle Cell Foundation, a North Texas group that works to educate others about SCD and advocate for those who have it.

Kambri is one of millions of individuals around the globe, including about 100,000 Americans, affected by the complex blood disorder that interferes with the production of hemoglobin, a protein in red blood cells responsible for carrying oxygen to the body. World Sickle Cell Awareness Day, observed annually on June 19, is an international event designed to educate the public about the challenges those living with the painful disease face, as well as raise awareness for possible treatments and funding for research.

“We only think of what we see in the United States…but this is really a global disease,” says Dr. Clarissa Johnson, M.D., a hematologist/oncologist and lead physician at Cook Children’s Sickle Cell Center, which treats about 400 patients throughout Texas each year. Dr. Johnson is actively involved in sickle cell research and has participated in several medical mission trips to countries, including Nigeria and Ethiopia.

“It affects people’s ability to have a meaningful life and their contribution to society if they’re greatly affected by the disease and limited in their ability to reach their goals,” she says. “It’s a chronic illness, it’s a lifelong illness, and it can also shorten the lifespan.”

SCD is a genetic condition in which a child receives two sickle cell genes, one from each parent. It’s estimated about 3 million people in the United States are carriers of the sickle cell trait even though they don’t have the disease. If each parent carries the trait, there’s a 25 percent chance their child may be born with SCD.

Worldwide, about 300,000 infants are diagnosed with SCD, most of them with African ancestry, according to the Sickle Cell Information Center. Of those children, 75 percent live in Sub-Saharan Africa. Without newborn screening programs and early detection, 50- to 90-percent of those children will die before the age of 5, the international organization reports.

Among the misconceptions of the disease, one is that SCD only affects those with African ancestry. Although the number of SCD patients of African-decent is highest, other populations are affected, including Hispanics from the Caribbean Islands, and Central and South America; East Indians; Middle Easterners; and those of Mediterranean decent.

Different types of SCD exist, depending on the traits inherited. The Center of Disease Control lists the following as the most common forms:

• HbSS—commonly known as “sickle cell anemia,” in which an individual inherits two sickle cell genes “S,” one from each parent. This is usually considered the most severe form of SCD.
• HbSC—an individual inherits an “S” gene from one parent and another gene from the other parent for an abnormal hemoglobin called “C.” It’s considered a less severe form of SCD.
• HbSbeta thalassemia—an individual inherits an “S” gene from one parent and another gene for thalassemia, a type of anemia, from the other parent.

Patients with SCD, depending on the type they have, may experience jaundice of the eyes or skin; anemia; sudden pain in various parts of the body; delayed growth; facial bone deformities; enlarged spleen; gallbladder disease; damage to kidneys, lungs and other vital organs; stroke; and bacterial infections. These conditions can be mild or become quite severe, depending on each individual’s case.

As it stands, there’s no universal cure for SCD, Dr. Johnson says. A bone marrow transplant (also known as a stem cell transplant) can cure the disease, but finding a perfect match is difficult and recipients may suffer serious complications after the procedure, she says.

Right now, managing the symptoms seems to be the best approach. For most SCD patients, that means staying hydrated to keep their blood healthy (promoting blood flow), getting enough sleep, eating a nutritious diet, staying up-to-date on vaccinations, maintaining a healthy body temperature (staying warm when it’s cold and cool when it’s hot) and exercising.

Medications, such as hydroxyurea (originally created to treat leukemia), also are used to help reduce the frequency of painful episodes and lower the number of blood transfusions and hospital stays for some SCD patients, but it’s not effective for everyone. One promising FDA-approved medication, Crizanlizumab, also known as Adakveo, has been prescribed for patients 16 and up to decrease the frequency of pain crises, and another drug, Oxbryta, is FDA-approved for patients 12 and up to increase hemoglobin for those with low base lines. Although approved for adults, the meds are still being tested in clinical trials with younger children.

Common nonsteroidal anti-inflammatory drugs (NSAIDs), such as aspirin, ibuprofen and naproxen can be used to manage some of the pain, but if it worsens into a crisis situation, SCD patients may need stronger forms, such as morphine or Dilaudid.

“That’s how severe the pain can be,” Dr. Johnson says. “We don’t want kids to suffer…we don’t want adults to suffer. So right now, we use what we have to use.”

A severe “pain crisis” is what typically brings SCD patients to the Emergency Department, Dr. Johnson says, and it’s also the most common reason for hospitalization. On average, SCD patients are hospitalized up to five to seven days after an episode.

While hospitalized, SCD patients may receive blood transfusions, which infuse healthy red blood cells into patients, lessening anemia and the viscosity of their blood, helping it to circulate easier through their bodies and provide more oxygen. The transfusions can ease complications from the disease.

“Blood donation is very important as transfusions are part of the treatment for many with sickle cell disease, and the blood has to be specially matched,” Dr. Johnson says. “Thus, it’s even more important to have those of similar ethnicity donating to increase the available blood supply for these patients.”

In the near future, Dr. Johnson says she hopes physicians will be able to treat the underlying genetic cause of the disease instead of just the symptoms. Research into genome therapy looks promising, she says, explaining that a patient’s mutated sickle-cell gene could either be repaired or a corrected version of it inserted next to it. The patient’s own healthy stem cells would be used, eliminating the need for finding a donor, she says. But research into genome therapy must go slowly to ensure researchers don’t inadvertently cause more complications while manipulating genes.

“I’ve told parents it’s not something we’re doing right now… but hopefully that is something that will give hope to having a universal cure in the future,” Dr. Johnson says.

Brandi Gaut is one of those hopeful parents, especially as she watches her daughter approach adulthood. She worries as Kambri gets older and doesn’t have her nearby as an advocate, she may suffer the same experiences that other SCD “adult warriors” have.

Brandi says one of the biggest misconceptions about SCD adult patients is they’re often perceived as “drug-seekers” when they go to emergency rooms in the middle of pain crises. Some health care professionals don’t want to give them pain meds because of a suspicion they’re abusing them, she says.

 “This disease is painful. What are you supposed to do when you’re in pain of that level? You need that medicine, but why is it you have to convince somebody?” she asks. “That same type of stigma is not always given to people who have leukemia or any other painful disease where they’re hurting or aching.”

She has seen it with Kambri when she has taken her to other healthcare facilities (not Cook Children’s) when they’ve been out of town.

“They’ll say, ‘Oh, she looks really good…maybe you’re not hurting that bad.’ But that doesn’t mean my daughter isn’t in pain just because you can’t see it on her outward appearance,” Brandi says. “That worries me…because like I told you, she goes and dances a whole recital and then leaves curled up in the backseat for the hospital. It worries me because she doesn’t wear her pain all over her face.”

“I’d like people to know, this is a very serious disease,” Brandi says. “I hope more attention is brought to it so there can be a cure, so people won’t have to live with years and years of suffering. Because it’s not only the pain—it attacks your immune system, it can affect your kidneys and all other parts of your body.”

In the meantime, while they hope for a cure, Kambri, who was diagnosed during a newborn screening with the HbSC form of SCD, continues to do the things she loves—like dancing, playing on her tablet and going to Camp Jubilee, an annual summer camp for area children with SCD. She has been involved with the Norvartis-sponsored clinical trial for Adakveo at Cook Children’s for the past year and a half and has had no SCD-related hospital stays since she began it. In the past, she usually was hospitalized three or four times a year, her mom says.

Kambri has definite plans for her future, in which she may transform herself into another type of warrior. Asked what she wants to be when she grows ups, she answers without hesitation. “I want to be a lawyer. I like helping people…fighting for people.”

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For more information SCD, listen to Dr. Johnson on “Unraveling the Complexities of Sickle Cell Care” on Cook Children’s Doc Talk podcast.

“These are a couple of toys for our PICU and TCU families,” she says, donning a plaid scarf and a Cook Children’s mask.

Coffee mug in hand, she speed walks to the door – partly to get out of the cold and partly to check in with the charge nurse as soon as possible before the COVID-19 Command Center call in 30 minutes. By her side is Lori Parrott, a pediatric intensive care unit (PICU) nurse manager, who’s helping carry in Christmas presents for patients.

“It sounds like we may have gotten two more overnight,” Melodie tells her as they briskly cross the sky bridge linking the garage and medical center.

As the director of the PICU and the Transitional Care Unit (TCU) at Cook Children’s Medical Center, Melodie wears a lot of hats. She’s a decision maker. A trusted leader. A master juggler. And she oversees a special wing dedicated to critically-ill COVID-19 patients known as 2North.

She quickly sets the bags down in her small, windowless office and heads to the nurses’ station without pause. Sitting next to a small Christmas tree, the charge nurse fills Melodie in on what happened overnight. A med alert, or medical emergency on the 3P, the stepdown COVID-19 unit, and a DKA, otherwise known as diabetic ketoacidosis. But the big news is the latest patient admitted to 2North. It’s a teenager transported in from another hospital. This patient makes eight on the unit, which has a total of 10 beds. This admission means her team will soon have to find more space to house the patients that are increasingly filling up the COVID-19 unit.

Back in her office, Melodie awaits her turn to speak on the Command Center call, a tri-weekly meeting for leaders entrenched in COVID-19 planning and processes. While sipping coffee, she listens as the director of infectious diseases rattles off the latest number of children who’ve tested positive for the virus. Today, it’s 112 in 24 hours, with 25 currently in the hospital.

Soon, it’s Melodie’s turn to share bad news.

“We may need to think about moving kids over to ‘A’ depending on what the continued census is, and especially if we get down to one bed,” she says as clearly and concisely as possible. “These kids continue to be quite ill and I don’t think any will go out today.”

Moving patients to ‘A’ means opening up a new COVID-19 ICU wing. The hospital is being stretched, but you wouldn’t know it by the positive tone of the call. People are optimistic; there’s hope on the way. They’re waiting on notification from Pfizer that the hospital’s allotment of the COVID-19 vaccine has shipped, which could happen at any moment.

We’re with Melodie this Wednesday morning, the week before Christmas, because she’s offered to show us something we have not seen before. She’s volunteered to take us inside 2North.

Inside the COVID-19 ICU

After the call, we follow Melodie down the hallway, her heeled-boots clicking on the confetti-laden floors. Big, purple double doors are ahead of us with 8-by-11, paper signs. They read, “Doors Must Remain Closed,” and “Isolation Garb for COVID (+) rooms,” with a long list of recommended attire: N95 or PAPR, surgical mask, gown, goggles or face shield, gloves, hair covering, and booties. Immediately upon entering, we see all of this gear in action. To the right, there’s a doctor towering over two nurses. All three are concealed inside in personal protective equipment (PPE) – yellow gowns, white masks and blue headcovers. The physician’s goggles resemble something you’d see on the ski slopes, but he’s not on vacation. He’s just left the room of a child who’s suffering a heart arrhythmia due to the virus.

It feels like we’ve just stepped inside a beehive or an ant bed. Every worker has a job and they’re busy doing it. The energy is fast-paced, but controlled. We watch as a respiratory therapist just a few feet in front of us straps on a PAPR, a small backpack that pumps air through a hose into a sealed helmet. Her speed and skill reveal that she’s done this many times.

To the right, a gloved nurse gives us a thumbs up through a window in a patient’s room. She’s talking to her colleague, who’s sitting at a computer on the other side of the wall. The two are communicating through a mini walkie-talkie type device called a ‘Vocera’ that’s clipped onto their scrubs.

“Can I bring you anything,” said the one sitting near us.

The nurse inside the room can’t leave. She’s halfway through a 12-hour shift, meticulously monitoring the many machines keeping her patient, a 12-year-old girl, alive. This is not a job for the weary. She’s an ECMO specialist, meaning she is precisely trained to take care of children who need extracorporeal membrane oxygenation (ECMO). This treatment is a last resort in which blood is pumped to a heart-lung machine that removes carbon dioxide and sends oxygen-filled blood back into the body.

When a child is on ECMO, two of these specialized nurses or respiratory therapists remain at the bedside at all times. Breaks for food and the restroom are limited. Layers of PPE keep them safe from the virus, but not comfortable. They wear two masks, a surgical mask on top of an N95, plus a face shield, gown, gloves and headcover. If they were soldiers, they’d be ready for war. Their enemy, though, can’t been seen – only the ravages it’s left on their young patient.

Melodie has asked if the girl’s mother would be willing to speak to us. She’s just woken up from the small couch/bed in the room and agrees to step into the hallway. Obviously exhausted, she tells us her name is Florence and that her daughter was diagnosed with COVID 11 days prior.

“She was having a mild temperature, so I brought her to the emergency room just so they could check her out, and we ended up here,” she said in a low, hushed tone. A steady beeping flows in the background.

“That visit was the best decision I made,” she said.

Due to the virus, Florence is the only person allowed to be in the hospital with her daughter. And she can’t leave the room, unless she is leaving the property. All meals are delivered. Anything she needs will be brought to the room for her.

We asked about her time at Cook Children’s, and how things have been.

“I love this place, and I love the staff,” she said.

Florence breaks down. She says everyone she has encountered at the hospital has treated her as if they were the only family there.

“That matters a lot,” she said with tears soaking into her mask.

Ready to return to her room, she shares one last thought: “The ECMO machine is a lifesaver.”

As she walks away, Melodie asks ECMO Manager Jill Pittman to suit up and join the two nurses inside the girl’s room. Shanna Senay and Sara Morgan are the ECMO specialists on duty today. They show us the machine that’s taken the place of the child’s lungs and heart. It’s a bulky contraption with multiple screens, tanks, and tubes, which are red with blood pumping through them.

“ECMO is allowing her lungs to rest and heal from the pneumonia, while we oxygenate her blood and circulate it throughout her body,” Shanna says.

She’s the nurse who gave us the thumbs up from behind the window.

“ECMO is the highest form of medical care that we offer at Cook Children’s, and it requires a lot of training,” said Jill, who’s been a nurse at the hospital for 23 years and now leads the ECMO program. “To be able to facilitate that and have an active role is very meaningful to me.”

ECMO patients are often on the machine for weeks, not just a few days. Because of that, ECMO specialists have to have endurance and the mental fortitude to keep going, even when there is no end in sight.

We’re curious and ask ‘Why do you do this?’

“There’s something special about being able to take care of these kids when they’re so sick and their parents can no longer give them the care they need. Then, it’s up to us,” Sara said with clean air being pumped inside her PAPR helmet. “It’s the last chance these kids have, so we fight every day, every night until they get to the point where they can get better on their own.”

Shanna nods in agreement.

“These kids are warriors. They’re why we push through and why we come out of here sweating bullets and having held our bladders for hours,” she says. “If it were my kid, I would want somebody doing the same thing.”

Back in the hallway, another group of 2North staff members gather to talk to us. One is a young nurse named MyKayla. She has bandages across the ridge of her nose and both ears to protect herself from her N95, which cuts into her skin and leaves sores. Five bandages total, but she’s not complaining. She says she loves taking care of children. It’s her calling.

A respiratory therapist named Joanna is with her, along with another nurse named Megan. They both echo MyKayla, saying they love what they do. We ask if they’ve ever felt scared. There’s a pause.

“Yes, I’ll say it. Especially with it affecting the Hispanic population, it worries me for my family,” says Joanna, who is Hispanic. “But, if God forbid, any of my family members get it and had to be in the hospital, I feel completely comfortable with our doctors, nurses, and respiratory therapists taking care of them.”

Megan jumps in.

“I’m not scared, but I have a healthy respect for it,” she says point blank.

Megan, tall and blonde, moved to Fort Worth a couple of years ago when her husband was sent to work at the Naval Air Station Joint Reserve Base. She was accepted into the competitive nurse residency program at Cook Children’s, and after six months was selected to work full-time in the PICU. She had just a few months under her belt before the pandemic hit. Nearly 10 months on 2North, she now seems like a seasoned nurse.

“I came into this profession knowing anything is game,” she says. “Since COVID, our teamwork as a unit has exponentially increased. It’s been stressful, it’s been frustrating, things are constantly changing, but we keep plugging through, trying to keep our spirits up, and the kids’ spirits up too.”

Off to the side, Jennifer Hayes has just exited a patient’s room. She’s a chaplain on the floor and is accustomed to the tougher moments of an ICU setting.

“The PICU is a hard and heavy place to work, and then you add COVID on top of that, it’s tough,” Jennifer tells us, her appearance failing to match her words.

She’s wearing a bright red shirt with a snowman on it. Her hair is short and brown, pulled up into two spunky knots. She explains her role, how she helps patients and families deal with difficult situations both emotionally and spiritually. She provides the same support to the PICU staff.

“I’m trying to bring joy and fun into the unit,” she says while showing off her fanny pack, creatively decorated to look like a taco for a contest she spearheaded.

She also tells us about the ‘COVID Café,’ a space she established on the unit for worn-out frontline staff to retreat to during their shift. They can watch TV, enjoy the snacks or one of the many word searches, games, or funny memes she’s left at the half-dozen socially distanced tables.

Jennifer is the caretaker of the caretakers, and one of the many moms on the unit. She, like everyone else on this floor, has had to change the way things are done at home. She explains how her 2 year old always wants to hug her as soon as she walks in the door, but can’t for fear that some microscopic particle of COVID-19 has made the trip home with her.

“It has been a big change and has created a delicate balance where we are trying to keep normalcy for our kids, but also we have to be mindful keeping them safe,” she says.

Ashley Miller, the charge nurse we saw filling Melodie in early this morning, agrees. She is also a mom and shares how her 14-year-old son watches the news and worries. She oversees the entire 43-bed PICU and is in charge of admitting each patient. She says the now is by far the worst they’ve seen of the pandemic.

“It’s a reality that kids can get COVID and they can become very, very sick,” she says. “It’s definitely a change from March, we’re seeing many more now.”

While we’re talking, Melodie reminds us about an 11:30 a.m. meeting we’re due to attend. It’s with PICU leaders, and they have a lot to discuss.

Leading During a Pandemic

We make our way down to the basement of the hospital where five women have gathered in a classroom. More are on a conference line. Their top concern today is overflow for COVID-19 patients.

“It’s hard to put a target on when we should open a new wing, because we don’t want to turn around and close it if our census lowers,” Melodie tells the group, which is spaced out around the large room. “But once we get to nine patients, that’s it, and that can change in five minutes.”

Until recently, 2North only had two to three patients at one time. Now, it’s pushing capacity. Finding more space and beds is not an issue. The problem is staffing. With a new COVID-19 ICU unit, more staff will be pulled in to take care of the children in the beds. That’s worrisome because burnout is already top of mind for these leaders. They will do anything to prevent losing essential caretakers. That includes Linda Thompson, M.D., medical director of the PICU, who’s sitting in the corner of the room. She is so concerned about burnout, she offers up her vacation home on the Texas coast for fatigued staff to escape to with their families. Everyone here is willing to do whatever they can to prevent from losing people in the pandemic.

“Ding, ding, ding – Ashley Miller.”

This is the sound of a call coming into a Vocera. Ashley, the charge nurse, is alerting the leaders that another COVID-19 patient is being admitted as they speak. Their discussion about overflow may take shape sooner than expected. They hurry to get through their agenda, knowing there is work to be done on 2North.

After the meeting, we part ways with Melodie. She’s off to do what she does best, leading her team during a challenging situation. We’re gathering our cameras and equipment to capture another area we’ve never seen, the step-down COVID-19 unit known as 3Pavilion, or 3P. Until today, 2North and 3P had been restricted to ‘necessary’ personnel only. Somehow, we got lucky, and are being allowed inside both.

Inside 3P – the COVID-19 Step-Down Unit

We take the nearest elevator to the third floor. As soon as we step off, Valerie Badgett, the day nurse manager, is waiting for us. She’s worked on this unit for 17 years and recalls the day this past March when administrators gathered everyone into a break room and told them they were about to be taking care of COVID-19 patients.

“This was a specialty med surge unit prior to COVID. We treated patients with renal disease, from acute kidney failure to children who received kidney transplants, and GI patients,” she explained. “When they told us we were going to become a COVID unit, people were understandably nervous.”

The administrators explained that their floor has a unique airflow system, which allows air to vent directly outside. This prevents airborne viruses from circulating through the ventilation system.

Valerie tells us more about that day in March, and how they had to quickly move their patients to other floors. They thought they had days to prepare for their first suspected COVID-19 patients. In reality, they had just hours before seven children under investigation for COVID-19 were admitted to their floor.

“There were a lot of questions at first because we didn’t know enough about it,” Valerie said. “But Dr. Whitworth came over the very next day and eased a lot of people’s concerns. She has always been there to answer our questions.”

Mary Suzanne Whitworth, M.D. is the medical director of Infectious Diseases at Cook Children’s. Valerie credits her composed leadership for helping the staff on 3P not only accept the challenge ahead of them but take it on as a mission they were called to serve.

Unlike 2North, the atmosphere on 3P is calm. It’s quiet and much larger than the ICU. Patient room doors stretch down two long hallways lined with purple and blue carpet. The only thing that visually sets this floor apart from other non-critical areas of the hospital is the donning and doffing of PPE happening all around us. Doctors and nurses are suiting up in PAPRs, gowns, goggles, and gloves before entering rooms. Knowing this team didn’t necessarily sign up to take care of COVID-19 patients gives us a whole new respect for them.

“It has brought a lot of new diagnoses that we didn’t take care of before, chemo patients, newly diagnosed diabetes, a lot of patients that we’ve gotten have come in the emergency department because they’re sick from something else, and then coincidentally they test positive for COVID,” Valerie said. “Many of our nurses have become certified in chemotherapy so they can take care of the patients we’re now seeing.”

Hearing how this unit has stayed together the past 10 months, even when they had opportunities to abandon ship to work in other areas, is inspiring. They’ve overcome fear, learned how to care for an array of injuries and illnesses, and built an unbreakable bond. They’ve proven resilient, and their strength is needed now more than ever.

“We have 20 beds on this floor, and today we have 17 patients,” says Ashley Kovacev, the night nurse manager who’s volunteered to give us a tour.

She walks us down the hallway, pointing out the negative pressure rooms they never had to use for isolation purposes until this year. We round a corner and an alarm is dinging. A light overhead flashes. Ashely peeks into the room.

“Are you ok?” she asks.

Inside, a mother needs help getting her child to the restroom. Ashley calls for a nurse.

Families on 3P rely on the staff for everything, including food and water. Like 2North, only one parent at a time is allowed per patient and they can’t leave the room unless they are leaving the hospital. Because of COVID-19, the floor’s family lounge and playroom are closed. Patients and parents are stuck in their rooms, but everyone tries to make the best of it.

One small glimmer of hope is the child life specialists and music therapists who don and doff PPE to deliver activities to the children’s rooms. We spot one, a young woman with long blonde hair, sitting alone in the closed playroom. She’s teaching a patient how to play guitar via Zoom, just one of the many creative ways the child life team is engaging isolated patients.

To the left, down a short hallway, a woman in a blue scrub top and black pants is pushing a large cart.

“That’s Rebecca. She’s been absolutely phenomenal since day one,” Ashley says. “We tease her because she literally wipes down the walls non-stop.”

Rebecca is an environmental services worker. She looks uncomfortable as Ashley gushes about how she has kept the team safe throughout the pandemic.

“Not a single person here has contracted COVID from our unit,” says Ashley, crediting Rebecca for their protection.

Reluctant to accept the praise, Rebecca says simply through her mask, “We have to take care of each other.”

As we near the end of the tour, a food services employee in a mask and goggles delivers a plastic bag full of Styrofoam containers to the nurses’ station. It’s just one of the many trips he will make to 3P today, delivering three meals to each of the 17 families on the unit. He, like everyone else we’ve met, smiles as he drops off the food.

It’s no small feat for any of these people – the changes they’ve adapted to. The anxiety of the unknown. The courage they’ve displayed. After spending eight hours behind-the-scenes of Cook Children’s COVID-19 units, we can attest to the following statement:

“Our staff truly honor our ‘Promise’ every single day,” Ashley says holding back tears. “It makes me emotional. These people are so resilient. They care for these kids like they’re their own. It’s truly amazing.”

“It’s an emotional day because we’ve waited so long for this pandemic to end,” said Debbie Boudreaux, Assistant Vice President of Nursing at Cook Children’s. “This has been a team effort from the very beginning, with our COVID-19 Command Center working tirelessly to adapt to all the changes we’ve had to make to keep our employees, patients and families safe.”

The vaccine arrived at Cook Children’s Medical Center just before 10 a.m. on Dec. 17 via a UPS truck. The vials were immediately transferred to a special freezer where they will be kept at minus-70 degrees Celsius until they are ready to be thawed and administered.

Today’s vaccination of frontline staff was considered a “soft launch” ahead of the full COVID-19 employee vaccination clinic, which is set to launch at 5 a.m. on Dec. 18. Frontline employees are prioritized and must register for their appointment.

“We’re so grateful to be surrounded by remarkable people who unselfishly come to work every day with the purpose of making a difference in the life of a child,” said Rick W. Merrill, CEO & President of Cook Children’s Health Care System. “By volunteering to receive this vaccine, our employees display great courage and commitment in doing what they can to bring an end to this pandemic.”

After receiving the vaccine, several Cook Children’s employees shared the reason why they took the shot:

“I am getting the COVID vaccine to help keep myself and other people safe from this, and so I can hug my adult children and parents in peace.”- Mary Suzanne Whitworth, M.D., medical director of Infectious Diseases.

“The reason why I’m taking the vaccine today is because my stepdad passed away last week from COVID complications, and it is super important to me, to my family, to the community, to get this vaccine as quick as you possibly can.” - Jason Reese, respiratory therapist

“I trust the science. I have been wearing full PPE since March, and I am truly exhausted mentally and physically. I know this is the only way to beat the virus because it’s been beating us in 2020.” - Deborah English, registered nurse on the COVID-19 unit

“I believe in the safety of our patients, and I want to make sure that we’re safe and they’re safe. I believe in the science, and I believe in Cook Children’s.” - Jill Fallahay, respiratory therapist with Teddy Bear Transport

Obesity? That's one.

Car accidents? That's a big risk too.

But would you guess the number one issue is asthma?

In Tarrant County, 19.5 percent of children suffer from asthma, according to data gathered in a survey sent to parents by The Center for Children's Health led by Cook Children's. The Community-wide Children's Health Assessment and Planning Survey (CCHAPS) was completed by more than 8,600 parents in Tarrant, Denton, Hood, Wise, Parker and Johnson counties.

"We questioned parents on everything from how often their child is buckled in properly to how many grocery stores in their neighborhood sell fresh fruits and vegetables," said Larry Tubb, senior vice president of the Center for Children’s Health. "The information we are gathering is extremely valuable when it comes to measuring the overall health of children in our region."

Overwhelmingly, parents in Tarrant County (and all of the surveyed counties) reported their children are dealing with asthma. In fact, children in this area ages 6-9 are three times more likely to have asthma than children living in other parts of Texas. While we don't know why the numbers are so high, we do know people with asthma have varying triggers, and what affects one person will not necessarily affect another. Those triggers include, but are not limited to, cigarette smoke, indoor and outdoor mold, pet dander, air pollution, dust mites, cockroaches, pollen, smoke and strong odors.

The second biggest health issue on parents minds is obesity, with 17.8 percent reporting concerns about their child's weight, activity level and access to healthy foods.

Accidental injuries rings in third. In Tarrant County, 11.9 percent of parents reported their children had been injured and required medical care. Those injuries range from car and ATV-related incidents to drowning, bicycle falls and crashes.

The fourth issue on the list is a lack of dental care for children. Parents reported 9.7 percent of children either didn't see a dentist regularly, didn't brush their teeth enough or some even reported their child didn't have their own toothbrush.

Finally, mental illness is the fifth biggest issue concerning parents in Tarrant County. Behavioral and emotional development is on the minds of 8.5 percent of respondents. Many reported their children have suffered sleep problems, self-esteem issues or have tried to harm themselves.

The survey used to gather this data is part of a Cook Children's initiative to improve the health and well-being of every child in our six-county region by 2020. This initiative launched in 2009 with the very first survey of its kind sent to parents. Since then, the surveys have been sent out every three years.

"The information provided by parents in our community is available on-line and being used by a host of organizations, including Cook Children’s, to build programs and services. There isn’t one perfect answer, but, together we are making solid progress in improving the health of the children in our community by putting the child and family at the center of our planning," said Tubb.

About The Center for Children's Health

The Center for Children's Health, led by Cook Children's, is home to the Community-wide Children's Health Assessment & Planning Survey (CCHAPS), Community Health Outreach and Community Health Research. The center's goal is to create aligned collaborations that will allow us to make our North Texas region one of the healthiest places to raise a child.

When I came home from the hospital with my new bundle of joy last fall, the first two weeks were filled with the tasks of survival – learning to feed my son, making sure he was growing appropriately, entertaining family and friends who wanted to meet him, catching a snooze here and there, and establishing a routine. After those two weeks ended and I had barely left my house, my next plan of action was: Operation Mama Sanity! I needed to get out!

Everyday in my office I have parents who ask me when they can take their newborn babies out and about, and get into the swing of life with their new child. My answer is always the same: now! But … with a few rules.

From day one it is absolutely fine to get out into the fresh air and go for a walk in the park, or in your neighborhood, if the weather permits.Try not to go out on extremely hot or extremely cold days, and as a rule of thumb, dress your little one in as many layers as you are wearing. Make sure the baby is not exposed to direct sunlight. Most strollers these days come with a nice shade for this purpose, or you can use an umbrella.

If you’d like to go out where there are a lot of people, like a busy restaurant, grocery store, or mall, I always tell parents to try to keep their infant’s seat completely covered by a light blanket.This serves a few purposes. First, a baby’s immune system before age 6-8 weeks is still immature. If someone at the next table sneezes or coughs, its best to have this protective canopy over them so viruses and bacteria are less able to come in contact with her. Also, it keeps the baby hidden as a deterrent to well-intentioned patrons from touching your sweet little one. As nice as that is, it’s best if people don’t touch your baby during those careful first weeks. 

If it’s holiday season and you and your new baby are expected at the family get-together, don’t fret. Just politely ask that everyone wash their hands before they hold her. If you’re too shy to ask them yourself – do what I tell my patients to do – blame me! Say, “My pediatrician says everyone has to wash their hands before holding her!”  This way no one can get their feathers ruffled. Carrying a small bottle of hand sanitizer and offering it to everyone is also a great and easy way to get germy hands cleaned. If someone appears to be sick and you don’t want that person to hold your baby at all, don’t. It’s Ok. You can blame that on your pediatrician too.

Don’t be afraid to go out with your new baby – she and YOU need it! Getting fresh air, exercise and social interaction in those first few months is vital to parents, and happy parents make happy babies. 

Hope my two cents help you muster the courage to venture out! And remember, many pediatricians have slightly differing opinions about these things, so it’s best to speak with yours if you have questions.

About the author:

Dr. Diane Arnaout joined the Cook Children's Willow Park practice in 2011. Dr. Arnaout was born and raised in the Dallas-Fort Worth area. She served as a leader on the medical education committees during her internship and residency in pediatrics at the University of Texas Health Science Center in the Texas Medical Center at Houston, Texas.