It’s not every day that you see a patient on extracorporeal membrane oxygenation (ECMO) walking around the halls of the hospital or taking a turn outside in a wheelchair. Children on this life-supporting device have very sick lungs. Most patients are fully sedated while ECMO assists their lungs in the exchange of blood gasses to properly oxygenate their body and its organs. But Emerson Bellucci is not most patients. 

“People would line the halls when she was up doing therapy,” said Ashlee Bellucci, Emerson’s mother. “Everybody wanted to see because they said this is not your typical ECMO patient. And I said, ‘Well, this is not your typical kid.’”

The 12-year-old from Fort Worth is one-of-a-kind in a lot of ways. Strong, resilient and mature beyond her years, Emerson not only beat the odds on ECMO, she survived a very rare and life-threatening reaction to the common antibiotic Bactrim, which she was prescribed to treat a staph infection she developed from cystic acne. The reaction is so rare, in fact, that few studies on the condition exist.

In 2023, physicians from Children’s Mercy Hospital and Clinics in Kansas City, Missouri, published a review of five cases of severe lung inflammation following the use of Bactrim, or trimethoprim-sulfamethoxazole. Like several in this case study, in the early days of Emerson’s reaction, her symptoms of fever, rash and difficulty breathing were initially thought to be the result of a viral infection. But her breathing became so labored that she was admitted to Cook Children’s Pediatric Intensive Care Unit (PICU) on August 18, 2024, where her care was overseen by a team of intensive care physicians and consulting specialists, including Javier Gelvez, M.D., pediatric intensivist, Krishna Pancham, M.D., pulmonologist, and Raymond Nkwantabisa, M.D., ECMO program medical director. In his 28 years of practicing medicine, Emerson is the first patient Dr. Nkwantabisa has treated for Bactrim-induced pneumonitis.

“Basically, Emerson developed severe inflammation in her lungs as a result of getting the Bactrim,” Dr. Nkwantabisa said. “This inflammation ended up causing pretty severe lung injury and damage to the air sacs in the lungs, resulting in pretty severe air leaks that required the placement of chest tubes to allow the air to escape from her lungs.”

Despite the chest tube placement and subsequently being placed on a ventilator, Emerson’s lungs were so inflamed that no amount of ventilator support could move air in and out of her lungs adequately to support her oxygen levels.

“We all need a certain amount of healthy air sacs to be able to breathe and exchange gases.” Dr. Nkwantabisa explained. “So when you get sick with, for example, very severe pneumonia where you don't have enough healthy open air sacs to exchange gas, we usually will intubate you and put you on a ventilator to breathe for you. But the ventilator only works when you have a reasonable number of healthy air sacs. If every air sac is injured or not working well, then the ventilator is limited in terms of how it can help.”

One day Emerson is a normal pre-teen dealing with all of the things that come with adolescent development and, within a matter of weeks, she’s on life-support with lungs so sick doctors began preparing her and her family for the possibility of needing a lung transplant.

“It's been the worst thing ever I could imagine,” Ashlee said. “But then there's been such high moments, you know, when I see her get up and walk with three ECMO lines in her legs. It's just miraculous.”

A Critical Lifeline

Think of ECMO as an external artificial lung. Tubes are inserted into large blood vessels, like the femoral artery and the femoral vein. Those tubes carry blue blood out of the body and pass it through an external machine that removes carbon dioxide and infuses oxygen into the blood. The oxygenated blood then flows back into the body, delivering vital oxygen to the patient’s organs. It is one of the most advanced forms of life support available.

There are very few patients that meet the criteria for remaining awake while on ECMO, says Danielle Ransonette, Cook Children’s ECMO co-coordinator. For one, the patient must have adequate pain control and tolerance without requiring complete sedation, and that doesn’t happen often, especially in children. The patient also has to be at a developmental level where they can follow directions and be reasoned with to protect the ECMO cannulae. Meeting the criteria meant Emerson had the opportunity to shoot a few basketball hoops, do physical therapy and to stand to hug her parents, all while on ECMO.

Rather than seeing the lung assist device as an obstacle, Emerson saw it as the lifeline that it was, and chose gratitude as her fuel.

“What definitely kept me going is I finally realized that it's my support,” Emerson said. “There was a huge chance I could have been dead without it. And I think that's definitely a huge reason that I'm still going.”

An Elite Force

Cook Children’s has a team of professionals specially trained to operate ECMO, and a member of this team is at the patient’s bedside 24/7 for as long as they are on the device.

Dr. Nkwantabisa likens this team to the military’s Navy SEALs, a team of elite special forces known for conducting high-risk and often covert operations. The ECMO team is called on when things are really dark and dire, he says. They are highly trained, highly competent and very low-key. Like the SEALs, these respiratory therapists and nurses are called away from their daily jobs and units throughout the hospital to accomplish a separate mission to care for an ECMO patient, sometimes for weeks or months on end. When all is said and done, they return to their respective units with little to no fanfare.

“It takes a special kind of person because, not only is it the wear and tear emotionally and physically that you go through, but there's also an intense amount of training that you come in and do over and above your regular scheduled hours,” Ransonette said. “It takes somebody who's truly dedicated, who really wants to further their knowledge and skills and really help take care of these kiddos.”

A Voice for the Voiceless

In late September, while still on ECMO, Emerson was transferred to a pediatric lung transplant center in Houston to prepare for a potential transplant. Once again, she defied the odds. On October 30, she was removed from ECMO and her transplant subsequently denied due to her recovery and progress. 

“It was just such justification for faith and God when we got the [transplant] denial letter,” Ashlee said. “Probably one of the happiest days of my life. Needless to say that that particular letter will be framed and placed at home.”

On December 12, Emerson was transferred back to Cook Children’s and admitted to the Transitional Care Unit (TCU) where her lungs continue to recover as she does daily physical therapy to strengthen her body.

“We consider [Cook Children’s] home,” Ashlee said.

Just as Emerson embraced ECMO as a lifeline, she and her family view her health and healing journey as one with purpose.

“We told Emmie early on when we were all trying to get a grasp on this just sudden change in her health, that God has a plan for her, and that she's got a story to tell when she gets through all of this,” said Robert Dancy, Emerson’s father. “We don't know what it is or how she's going to use it, but she's going to have a story to tell to help other people.”

Part of that story is the role parents and caregivers can play in supporting other children on ECMO. Having experienced ECMO while awake, Emerson was uniquely positioned to share her discomforts, such as feeling cold while on the machine, and how solutions like hot packs and warm blankets helped her feel more comfortable. Emerson hopes to use what she’s learned from the experience to be a voice for the voiceless, guiding caregivers in easing the pain and discomfort of those on ECMO who cannot communicate their needs.

And she has a message for other children facing life-changing circumstances and hardships.

“Never give up,” she said. “You will have days when you don't want to do anything because you're going to feel like you're never enough. But, no matter what, never ever give up. Keep the faith.”

A Pillar of Pediatric Care

James “Jim” Cunningham, M.D. a beloved figure at Cook Children’s, is retiring after a distinguished career dedicated to the health and well-being of countless children. Dr. Cunningham’s journey at Cook Children’s took him from Medical Director of Pulmonology to Chief Medical Officer to Executive Vice President/CMO. All along the way, his path has been marked by compassion, innovation and a steadfast commitment to excellence. He has left an enduring impact on the institution and the community it serves.

Born and raised in Texas, Dr. Cunningham’s roots run deep in the Lone Star State. His early years sparked a curiosity about the scientific world, leading him to pursue a degree in Zoology at Texas A&M University. This academic foundation laid the groundwork for his future in medicine.

A Passion for Pediatrics

After completing his medical degree at the University of Texas Medical Branch at Galveston and his residency at the University of Oklahoma, Dr. Cunningham specialized in pediatric pulmonology at the University of Arizona. His passion for caring for young patients, particularly those with complex respiratory conditions, ignited a desire to make a difference in their lives.

"I was drawn to pulmonary medicine because it offered a unique blend of acute and chronic care. It's incredibly rewarding to treat children with acute conditions like pneumonia, watching them recover and go home,” Dr. Cunningham said. “At the same time, managing chronic diseases such as cystic fibrosis or severe asthma allows you to build strong bonds with patients and their families. It's deeply meaningful to participate in their lives, watch them grow, and help them navigate their health care challenges. The combination of acute care and long-term relationships with patients and families was what ultimately attracted me to pulmonary medicine."

Decades of Dedication to Cook Children’s

Dr. Cunningham joined Cook Children’s in 1987, drawn to the organization’s commitment to providing exceptional care to children. Over the past three decades, he has played a pivotal role in shaping the institution into a world-class pediatric health care provider.

As a physician and administrator, Dr. Cunningham has made significant contributions to the field of pediatric pulmonology. His expertise in managing complex respiratory conditions, such as cystic fibrosis, has improved the lives of countless children. His dedication to advancing medical knowledge through research has led to groundbreaking discoveries and innovative treatments.

Beyond his clinical and research endeavors, Dr. Cunningham has been a visionary leader, guiding Cook Children’s through period of substantial expansion and modernization. His strategic insights and unwavering commitment to quality have helped position Cook Children’s as a leader in pediatric health care.

"This place has been a significant part of my life for a long time. Many of my adult friendships are centered around it, and it's been rewarding to watch its growth. However, I'm confident that the pulmonary program is in excellent hands with (Karen Schultz, M.D.), (Sami Hadeed, M.D.), (John Pfaff, M.D.), and the other talented pulmonologists. I believe the program will continue to thrive and achieve great things."

A Well-Deserved Retirement

As Dr. Cunningham embarks on his retirement, he leaves behind a legacy of compassion, innovation and leadership. His departure marks the end of an era, but his impact on Cook Children’s and the children it serves will continue to be felt for generations to come.

“Over 17 years ago, one of my first decisions as President and CEO of Cook Children’s was to hire Dr. Jim Cunningham as Chief Medical Officer. I had met Jim during my interview process and was immediately impressed by his kind and compassionate nature. His servant’s heart was evident, making him the ideal choice to lead our organization into the future,” said Rick W. Merrill, President and CEO of Cook Children’s Health Care System.

Looking ahead, Jonathan Nedrelow, M.D., will assume the role of Chief Medical Officer at Cook Children’s. Most recently, Dr. Nedrelow served as Senior Vice President and Associate Chief Medical Officer at Cook Children’s. A renowned expert in neonatal-perinatal medicine, Dr. Nedrelow bring a wealth of experience and a strong commitment to pediatric health care to this pivotal role.

"I was fortunate to have the opportunity to start succession planning early on,” Dr. Cunningham said. “This led me to think about the future of the program and how to ensure a smooth transition. I immediately thought of Dr. Nedrelow, and we had several conversations about the process. He's been leading the program for about a year and a half now, and he's exceptionally qualified. He's highly intelligent, well-respected, and I'm confident that the program is in great hands with him."

Dr. Cunningham’s colleagues and friends at Cook Children’s extend their heartfelt gratitude for his many years of dedicated service.

Rick W. Merrill, President and CEO of Cook Children’s Health Care System

“For nearly four decades, Dr. Cunningham has been an invaluable asset to Cook Children’s. As our Chief Medical Officer for the past 17 years, he has steadfastly upheld our Promise to our patients, families, physicians, and staff. As he embarks on a well-deserved retirement, he will be deeply missed. We are grateful for his invaluable contributions and look forward to the leadership of Dr. Jonathan Nedrelow. However, Dr. Cunningham’s enduring impact on Cook Children’s will forever be remembered."

Jonathan Nedrelow, M.D. current Chief Medical Officer

“Dr. Cunningham’s patients had the rare privilege of being taken care of by one of the most kind, thoughtful, unassuming, and intelligent doctors I have ever known. His legacy can be found in all the children that had a chance to grow up healthier because of him. Personally, words cannot describe the gratitude I have for the mentorship and friendship he extended to me. I wish him all the best enjoying his family and friends in retirement.”

Bobby Feather, Senior Vice President, Public Policy

“Over the last 30 years, it has been my privilege to labor beside a number of extraordinary people in the Cook Children’s administration.  Jim Cunningham is an incredible individual.  I have known him to be a highly dedicated leader and principled professional colleague.  When it comes to integrity, compassion, loyalty, flexibility and wisdom, Dr. Cunningham is fourteen carat.  As a friend, he is a rare find.”

Karen Schultz, M.D., Medical Director, Pulmonary Services

“There is no way to state how much Dr. Cunningham has meant to Cook Children’s or to me personally. He has been a rock from the day that I started fresh out of fellowship—initially with clinical questions but morphing into advice on how to lead the pulmonary department (and who to ask when I need something). His compassionate care for patients is an example for all physicians to emulate. I can only hope to have a fraction of the impact that he has had caring for pulmonary and all patients and families and Cook Children’s."

Nancy Dambro, M.D., retired, former Medical Director of Pulmonology and President of the Medical Staff

Jim Cunningham and I did our fellowships together at the University of Arizona in Tucson. Subsequently, we and our families moved to Fort Worth and Cook Children’s Medical Center together in 1987. Until I retired in 2020, Jim and I worked together for a total of 36 years! A long time for two physicians.

Through those years, I have seen Jim as one of the most insightful, thorough, and hard-working physicians I have ever worked with. He led the building of a very well-thought-of Pulmonary Department from the ground up, including a nationally recognized Cystic Fibrosis Center. In doing so, he built a cohesive clinical team that continues to be strong.

Later, he became the CMO of Cook Children’s Healthcare System, and lent his collegial leadership style to the entire organization. Jim‘s impact on the growth of Cook Children’s is probably unequaled.

Through this pretty challenging career, I never saw Jim lose sight of the importance of his own family; he is a great husband and father.

And he is a good friend.

Britt Nelson, M.D., retired, CCPN's president from 2009 to 2021, long-time friend of Dr. Cunningham

“Jim Cunningham always brings understanding into a room. He can communicate across many levels of listeners complex concepts in whatever language is needed. He is a honyawker to honyawkers, a kid to kids, an executive to executives and a leader to leaders. He is the brightest guy in the room – always.

His fingerprints are all over Cook Children’s and the success it has enjoyed. Best? He loves children and served them with his every word and action.”

Follow up to Dr. Nelson: What is a honyawker?

“I don’t really know, nor do I know how to spell it. Dr. Cunningham uses that word frequently to describe ‘a good ole boy’ with a slightly goofy slant. He’s used it in the highest level of our organization, and it elicits smiles as he describes folks (usually males) who are freewheeling and a bit (off-the-wall). It’s a term of endearment … sort of. He’ll smile when he sees this and correct me! What I could never discern was whether I wanted to be considered a honyawker. Pronounced –ho’n-yaw-ker.”

"One of the triggers of asthma symptoms are respiratory viruses and we are seeing a large number of those driving people to access Emergency Care," said Corwin Warmink, M.D., medical director of Emergency Services at Cook Children's.

Karen Schultz, M.D., medical director of Pulmonary Services, advises parents of children who have asthma to make sure they have an asthma action plan. An asthma action plan should be provided by the outpatient physician who cares for the child's asthma or, if admitted to the medical center, will be provided by the discharging nurse at Cook Children's.

The written plan helps patients develop with their doctor the methods to help control their asthma. The plan looks at the daily treatment of the patient, including medication to take and how to control asthma long term and how to handle worsening asthma, or attacks.

"General signs of initial worsening of asthma include some difficulty breathing, coughing and wheezing, problems working or playing, or waking up at night coughing," Dr. Schultz said. "At this point families should start using their rescue medications as instructed by their physician. Families should call their physician if their child has required three extra treatments in a 24 hour periods or they need them more frequently than every four hours."

Worsening signs of asthma include breathing that is hard and fast, trouble talking or walking, inability to work or play, constant coughing, or a color change in the lips and/or nail beds. At this point, rescue medications should be given and the family should seek immediate care.

To learn more about asthma, Dr. Schultz answered a few of our questions:

1.What is asthma?

Asthma is an inflammatory process that happens in the lungs that causes swelling and increased mucus down in your lungs so it makes it harder to breathe.

2.When do asthma flare ups occur?

An asthma flare up occurs when someone is exposed to a trigger of their asthma. The muscles around their airwaves actually squeeze down and make it even more difficult for people to breathe. They can also get more mucus and more swelling in their lungs, which also makes it harder.

3.What are the triggers?

People have different triggers for their asthma. The most common ones tend to be weather changes, viral infections and exposure to certain allergens. Cold, dry air can cause bad flare-ups and viral infections are the most common trigger this time of year. Parents should stress to their children the importance of handwashing, especially this time of year.

Allergens could include cats, pollen, grass and mold. Another big trigger is exposure to smoke. Exposure to second-hand smoke is a big issue with kids with asthma. Not only can it be a trigger for an asthma flare, but it can keep your child’s asthma from ever getting under control in the first place. Any parent who has a child with asthma, should not smoke. Even smoking outside exposes your child to some smoke particles and can still keep their asthma out of control.

4.Who gets asthma?

Asthma happens to people with a genetic predisposition who then have the right trigger to start their asthma flaring at the right time.

Depending on the age, asthma can be diagnosed in different ways. In very young children and toddlers, it’s diagnosed based on their symptoms and what their physician on examination. So kids that have recurrent wheezing are diagnosed with asthma.

In older kids, 5 years and up, lung function testing can be done to help determine asthma severity.

5.What are the symptoms?

Common starting symptoms of an asthma flare often are just cough. Sometimes families can start seeing the kiddos breathe harder and faster and sometimes they can actually hear them wheeze. But often the wheezing can only be heard by a physician.

If they start noticing their child is breathing very rapidly, if they are sucking their air in above their sternum or in between their ribs, then those are signs that they are really struggling to breathe and a doctor needs to take a look at them.

6.How is asthma treated?

Asthma is treated with inhaled medications generally. The most common medication we use is albuterol which helps relax the muscles that tighten down around the airwaves. However, this will not prevent asthma attacks. To prevent asthma attacks, patients are often placed on inhaled steroids to help control the swelling and mucus in their lungs so they can breathe easier.

Asthma is monitored mainly by symptoms. Your physician may ask how often you are using your rescue inhaler or your albuterol to help determine whether your asthma is under good control or not.

The best way to control your child’s asthma is for him or her to take the medication that your physician prescribes on a regular basis. Many people will think that their children’s asthma is under good control and they will stop their medications and that’s when they start having more flares of their asthma.

Everyone with asthma should have an action plan. It will list out your child’s medications and what to do when they start having symptoms. It will tell you what to do when they have mild symptoms or more severe symptoms and should direct you to the appropriate health care resource should they start having more difficulty.

When children use inhalers for their asthma, they are more effective if they use a spacer, which is generally a clear plastic tube with a mouthpiece that helps the medicine deposit into your lungs rather than stuck on your tongue if you just puff the inhaler in your mouth.

7.When should I see a pediatrician?

If your child is having an asthma attack that’s difficult to get under control, you can try doing extra albuterol treatments or extra puffs of your albuterol. If your child needs more than three extra treatments in a day, then you need to contact your physician.

Related articles

• Asthma Information from Cook Children's
• Asthma Center
• Asthma and your child
• Can my child die from asthma? Yes.
• Why asthma shouldn't be an excuse for keeping your child off the field
• Innovative program keeps kids with asthma in class - and out of hte ER

Wheezing, coughing and the struggle to catch a single breath.

Sounds like asthma, right?

But there may be another cause for respiratory distress in your child: vocal cord dysfunction.

Asthma and vocal cord dysfunction (VCD) seemingly show the same symptoms, especially in adolescents. But what’s the difference between them?

Cook Children’s Emergency Department sees an average of 13,000 children each year exhibiting wheezing and difficulty breathing. The similarity of symptoms between asthma and vocal cord dysfunction may be difficult to differentiate to the eye so it’s important to note the small distinctions.

“Asthma and VCD are quite different even though some of the symptoms can overlap,” Corwin Warmink, M.D., medical director of Emergency Services at Cook Children’s said. “VCD causes difficulty breathing in compared to asthma, which makes it more difficult to breathe out. They also sound different when using a stethoscope to examine a patient.”

Unlike vocal cord dysfunction, asthma is an immune response when the body is exposed to various “triggers,” such as air pollutants, physical activity and airborne particles like pollen and pet dander. When triggered, the bronchial muscles in the airways constrict and the sudden obstruction causes the reaction of an asthma attack.

You may be experiencing an asthma attack if your symptoms include:

• Tightness in the chest

• Difficulty breathing

• Shortness of breath

• Coughing and wheezing

• Excess mucus

Vocal cord dysfunction is the abnormal closing-together of the vocal cords, resulting in the loss of airflow. Unlike asthma, VCD does not involve an immune response or a reaction from the airways. Vocal cord dysfunction makes it more difficult to breathe in than breathe out when symptoms occur.

Children who are active, vocal and use their vocal cords more than usual may have higher tendencies to experience VCD.

“We see VCD most common in female teenage athletes although it does occur in males,” Karen Schultz, M.D., pulmonologist at Cook Children’s said. “Type “A” personalities are at higher risk.”

You may be experiencing vocal cord dysfunction if your symptoms include:

• Tightness in the throat

• Difficulty breathing

• Coughing and wheezing

• Hoarse voice

Asthma and VCD are regularly confused as the symptoms and triggers are similar. Many patients with VCD are originally treated for asthma.

“Patients are diagnosed by history, exam and lung function testing,” Dr. Schultz said. “Lung function testing can be completely normal in both conditions when no symptoms are present. Frequently history alone can differentiate the two. Occasionally lung function testing after exercise can be diagnostic or laryngoscopy after exercise”

Signs you may be experiencing VCD instead of asthma:

• It is more difficult to breathe in than it is to breathe out

• Asthma medications and inhalers do not ease symptoms

The diagnoses for VCD and asthma are different. Asthma requires pulmonary function tests, such as a peak flow and a spirometry test. While a diagnosis for vocal cord dysfunction typically entails results from other pulmonary function tests, such as a laryngoscopy or a spirometry test.

Many children who are diagnosed with vocal cord dysfunction are referred to see a speech pathologist who can assess the degree of dysfunction, and begin a plan of action with different types of breathing and stretching exercises for the vocal cords.

“There are a number of ways we treat different diagnoses, but we will usually start with breathing exercises to make sure air flow is unhindered and the vocal cords can be well supported,” Melanie Van Noy, speech pathologist at Cook Children’s said. “Then we may do simple exercises to lengthen and stretch the vocal cords or exercises to reduce pressure. It depends on the diagnosis and the dysfunction.”

While VCD does not have specific medications to ease symptoms, speech therapy is tailored to allow children and their families learn triggers and how to cope when an attack does occur.

“For kiddos, a large part of our job is helping our young patients to become more aware of their vocal habits and educating not only them but their parents and siblings on how they can help change those habits, Van Noy said. “We also have some sophisticated software programs that help give our kiddos the feedback they need so they can not only hear the difference, but see the difference and the changes they are making as well.”

Speech therapy typically teaches and treats children for three to five sessions. If the child is still showing symptoms, a team of Cook Children’s doctors will begin to assess all the different aspects to their case.

“Our ENTs and pulmonologists work closely together to ensure that if our treatment plateaus or the patient is still showing symptoms despite treatment, we can collaborate on what to do next,” Van Noy said. “That may look like a discussion with the physician regarding compliance and progress of treatment, what other medical intervention strategies are available or maybe just another episode of care, which is what we refer to as our plans of care.”

Karen Schultz, M.D., a pediatric pulmonologist at Cook Children’s understands the hype, but she sees at least one potentially dangerous side effect for children with asthma.

“To date, there are no published studies that prove or disprove the benefits of salt therapy,” Dr. Schultz said. “As with any therapy, even natural, there are potential side effects. One known side effect of inhaling a salt solution is constriction of the airways which could worsen asthma. So, even though the idea of a non-medicinal cure is attractive, at this point it cannot be recommended without further studies of both safety and results.”

On a website that lists salt rooms, more than 30 states have them. In Texas, at least two locations are in Dallas, one in Fort Worth and they are also found in Austin, Granbury and Southlake.

Saltescape.com describes a salt room, or halochamber, as “a microclimate designed to simulate the environment of a salt mine. The salt room is a dry, sterile environment that controls air temperature, humidity, air pressure and air content. Salt rooms are covered ceiling to floor in a salt application and utilize a halogenerator to crush pharmaceutical grade salt into small particles for inhalation to create the desired microclimate.”

Salt therapy offers a drug-free, non-invasive treatment where salt micro-particles enter into the lungs to help the healing process. Children as young as 3 months old have received treatment. Proponents of salt therapy believe children benefit from salt therapy because they are more prone to respiratory problems and their lungs aren’t fully developed until they are 9 years old. 

"Treating medical conditions without medications does have its appeal, so we are always on the lookout for new ideas and ways of doing things. We must continue to evaluate new ideas with studies that compare any possible risk against the benefit,” said Dr. Schultz. “You can certainly find multiple testimonies from people who swear that they are better after salt therapy. In fact after people with cystic fibrosis (CF) anecdotally noticed that they did better by the ocean, studies proved that use of an inhaled salt solution slows progression of disease, and it has now become a standard therapy.”

About the source

Karen Schultz, M.D., is a pediatric pulmonologist at Cook Children's. To schedule an appointment with her call 682-885-6299. The Cook Children's Pulmonary team diagnoses and treats children with lung diseases. Our team includes board certified pediatric pulmonologists, clinical nurse specialists, registered nurses, respiratory therapists, Child Life specialists, clinical dieticians and social workers. The professional opinion of each team member, including parents, is considered in developing a plan of care for your child. We place a high value on continuity of care with your primary pulmonologist.

Who were they kidding? There's no emotional prepping anyone could do at that time. So, off to the OR for delivery we went. Talk about scared! They gave my baby a 10 percent chance of survival and they gave me a death sentence if they didn't deliver right then and there.

Graysen was brought into this world three months early weighing 1.4 pounds and not crying, or breathing. I remember seeing that he was the size of the nurse’s hand when she was working on him. I got to take one look at him before they had to intubate him immediately to get him breathing, since he was turning blue.

They then hurried away with him to the delivering hospital’s NICU. He was supposed to be born on March 15th (spring break baby) and he came into this world right before Christmas. With only a diaper the size of a tiny flip cell phone (which was the phone we had 10 years ago!), and under a heat lamp for warmth, inch by inch, ounce by ounce, he grew.

Weeks into life, the doctors decided to start feeding him by NG tube (Nasogastric tube that runs through the nose and into the stomach for feeds).

He did fine tolerating the feeds until he got an infection in the intestines, called necrotizing enterocolitis, also known as Nec. This made his belly swell up and, if not cured properly, could have resulted in a hole in the intestines, which is fatal. Surviving Nec was thought to be low. The doctors called to inform me that he was not doing so well and needed to be transferred by Teddy Bear Transport to the Medical Center’s NICU.

They loaded him up and took him by ambulance after two months in the NICU where he was born to begin his next few months of growing. Cook Children’s slowly nursed him back to better health, and, luckily, Graysen did not need surgery on his intestines. Miraculously, he pulled through another obstacle.

Weeks went by before they attempted to feed him again. In the meantime, the doctors had a central line surgically put into his chest so he could receive his nutrients properly. After a few weeks of feeds, the doctors started to see major improvement. They took him off the respirator and put him on a high flow nasal cannula to help with Graysen’s oxygenation and breathing. He did great with this new machine. Now breathing well, it was time to introduce the bottle at around 3 months. He took it, but not all of it.

The doctors had to decide what to do about the feeds he was leaving behind. They decided to put a G-button surgically into his stomach so that the left over feeds could be received by tube. This was the turning point. The hardest decision I had to make. Once that G-button was placed, I would have a medically dependent child.

After being in the NICU for five months, this was the only way he would be able to come home, and I was ready for that day. I gave the doctors the approval, and off to his first surgery he went. That was the first of 14 surgeries he would have throughout his first 10 years of life. Surgeries followed including fundoplication (an operation to prevent stomach contents from returning to the esophagus), hernia repairs, tonsillectomy, and a tethered spinal cord repair. Just to name a few. His spinal cord was taut at the end and neurosurgery was scheduled at 12 months. He caught meningitis after the surgery and, once again, beat dangerous odds.

Graysen went through so much that he didn’t eat. For six years, he was completely tube fed. He went through many years of intensive feeding therapy. He still didn’t want to eat orally. I put him in kindergarten and he saw his peers eating by mouth. That sparked an interest and, at 6 years old, he started eating. Now he demolishes whole cheeseburgers and fries! Not only has he beat death numerous times, he's gone through 14 surgeries and countless doctor appointments getting him to where he is now. This kid is here for a reason. This month we celebrate Graysen's 10th year of LIVING! Graysen is my Christmas miracle.

I could not have done this alone. I am so thankful that I had, and still have, a great network of people working together at Cook Children’s. Without their dedication to their job and to children, I don’t know if Graysen would have made it. Dr. Nancy Dambro was one of his main doctors from the time Graysen was born. Dr. Michael Deitchman has been his pediatrician through all the rollercoaster ups and downs. I can’t thank him enough for his support, countless visits and patience with us. We also see Dr. Jose Iglesias, Dr. Jill Radack, Dr. Bankole Osuntokun and Dr. Fernando Acosta.

It takes a village in Graysen’s case, and I’m glad our village is Cook Children’s!