Story by Jean Yaeger. Video by Tom Riehm.

Babies and toddlers treated for viral respiratory infections at certain Cook Children’s locations can get their breathing checked at a special clinic that provides free follow-up visits. 

The clinic serves children ages 2 months to 2 years old who were previously admitted to these Cook Children’s facilities: Medical Center, Emergency Department (ED) or Urgent Care centers. What’s the benefit? For up to a week after these patients go home, their caregivers can bring them to be seen by therapists who specialize in caring for the lungs. 

No appointment is necessary at the Cook Children’s Respiratory Outpatient Clinic. But patients must have a referral from a provider at the Medical Center, ED or Urgent Care centers.   

The clinic is designed to give guidance and reassurance to parents whose little ones are continuing to recover from severe bronchiolitis. If a child has trouble breathing or other complications within seven days of being discharged, the experts at the clinic can do an evaluation. 

Janie Galindo found out about the clinic at the Cook Children’s Urgent Care center where her twins, Dallas and Dionne, tested positive for the respiratory syncytial virus (RSV) in October. Thanks to a referral from their Urgent Care provider, Janie had access to the clinic when her babies got sicker overnight. As soon as the clinic opened the next morning, they were there.   

Just as their mom suspected, Dallas’s and Dionne’s symptoms had gotten worse. A respiratory therapist met them at their vehicle and took them inside for evaluation. In their case, the clinic checkup ended with admission to the hospital.   

Janie is grateful for this resource. And she urges other parents to take advantage of the clinic, which Cook Children’s has offered every year since 2019 during peak season for respiratory illnesses. The clinic saw 119 patients from September through December 2022.

A surge in RSV and flu cases has hit hard in North Texas and nationwide in recent months, contributing to long wait times in health care settings. But the convenience of the Respiratory Outpatient Clinic at Cook Children’s can allow families to avoid returning to the crowded ED or Urgent Care locations where their child was recently treated. 

Families come to the clinic seeking peace of mind. Many children are doing OK and can go back home. Others might need additional treatment as Dallas and Dionne did. 

“It was so helpful,” Janie said. “If your babies aren’t better, just to ease your nerves, just take them in. It doesn’t hurt.” 

The clinic, located at the Medical Center in Fort Worth, is open through March. Hours are from 11 am-7 pm daily. Here’s how it works: 

• Get a referral and instructions when your child is discharged from Cook Children’s Medical Center, ED or Urgent Care with a bronchiolitis/RSV diagnosis.  You can come to the clinic as often as twice a day over the next week. 
• Park in the designated area, call the clinic when you arrive, and wait in your vehicle.
• In the meantime, registration personnel verifies that your referral is on record.     
• A respiratory therapist from the ED walks you to the clinic. The therapist checks your child for labored breathing, low oxygen, dehydration and other concerns. The therapist also determines if your child needs further medical attention.  
• There’s no charge, and insurance isn’t required. 

Cathy Carroll, respiratory director at Cook Children’s, said the clinic is structured to serve children with RSV or bronchiolitis who are otherwise healthy after they leave the Medical Center, ED or Urgent Care. If concerns arise while their children recover at home, parents can bring them to the clinic for a quick outpatient visit. “It’s very helpful, reassuring and a great experience for parents,” she said.

Carroll said the clinic is staffed by respiratory therapists who reinforce the educational tools that were provided when the patients were discharged earlier. The therapists take the opportunity to explain signs of low oxygen -- teaching parents to look for fast or shallow breaths, flared nostrils and bluish lips. It’s a model that aims to prevent unnecessary return trips to the ED or Urgent Care. 

The clinic was there when Dallas and Dionne needed help to fight RSV. This is their story. 

Two Too Sick  

Dionne and Dallas were born 15 weeks early, in August 2021. They each weighed less than 2 pounds, and their lungs weren’t fully developed. Dallas was intubated to help him breathe while in the neonatal intensive care unit (NICU). After several months in the NICU, the preemies were strong enough to join their parents and three older siblings at home in Fort Worth. 

The U.S. Centers for Disease Control and Prevention puts children like Dionne and Dallas in a category for higher risk from RSV, due to their impaired lungs at birth. Other higher-risk groups include infants younger than 6 months old, and children with heart disease or weakened immune systems. 

One day in October, Dallas started running a fever, coughing and throwing up. Dionne soon came down with similar symptoms. The 14-month-old siblings were too sleepy to play or eat. Dionne, who is normally feisty, wanted to be held constantly. Dallas, who is normally cuddly, wanted to be left alone. Then he started breathing rapidly. 

“I don’t think this is a cold,” Janie thought at the time. She took both twins to Cook Children’s Urgent Care, where they were tested for flu, COVID-19 and RSV. The RSV tests came back positive, but their vital signs weren’t alarming. 

Urgent Care staff gave Janie a referral to the Respiratory Outpatient Clinic and encouraged her to take the twins for a follow-up visit if their illness changed for the worse anytime in the next week. Back at home, Janie grew concerned when the babies had more trouble keeping food down. And she thought Dallas’s lips began to look gray.  

“They were really groggy. They weren’t crying because they didn’t have energy. They were just blah. Dallas had a really bad cough. Dionne wasn’t doing good at coughing it out.” Janie wanted a medical professional’s opinion. 

So she took the twins to the clinic’s designated parking area when it opened at 11 am. Within the hour, therapists were evaluating their condition. Dallas and Dionne then were admitted to the Medical Center, receiving oxygen and IV fluids for dehydration. A high-flow oxygen device was used on Dallas because his oxygen level kept dropping when he slept, Janie said. 

The twins perked up quickly. They wanted to eat and play with toys in their hospital room. But their airflows still needed monitoring, and they needed rest. Dionne stayed in the hospital for six days; Dallas for nine.  

Janie said she appreciates that because of the referral from Urgent Care, the clinic already had the background on Dionne’s and Dallas’s diagnoses. That made it easier and faster to get checked out by respiratory experts the next day without having to go back to Urgent Care. “It was nice to already know what was going on. We were just following up on that.”   

More info on RSV 

Most of the time, an RSV infection causes a mild illness like a cold. But it can also lead to bronchiolitis or pneumonia in young children. Early symptoms are runny nose, decrease in appetite and cough. Get medical help right away for more serious symptoms:

• Fast, shallow breathing, indicated by the belly moving up and down quickly and the area around the ribs sinking in. 
• Extreme fussiness, can’t be comforted.   
• Sleepiness, won’t wake up for feedings. 
• Poor appetite and fewer wet diapers.  
• Blue color to the lips, tongue or fingernails. 

Help prevent the spread of RSV by washing your hands often, avoiding close contact with sick people, covering your coughs and sneezes, and staying home when you’re sick. 

We’ve been through so much already in her young life and many of you reading this have followed her story since her birth. I thought this would be a good time to provide an update. “So, how is Avery doing?” A question my husband, Shawn, and I get on a daily basis and we’re often not sure how to answer. Avery is doing well and is a very happy and easy-going baby. She is still on oxygen and will be for a while. And she still eats primarily through her G-button (feeding tube). She continues to make progress but at her own pace. Some people take baby steps; we take micro preemie steps.

One of the hardest parts about being home is that we no longer have a medical team that monitors her daily. I got so used to asking her nurses, therapists and doctors about what was considered “normal” for micro preemies and what wasn’t. Now it’s our job to decide whether something is worth calling a doctor about.

As time goes on and we continue to deal with new issues related to her prematurity, I am developing new coping mechanisms. Some are more productive than others. One has to do with planning her first birthday party.

As I began thinking about her first birthday, it became an obsession for me to create a perfect “Pinterest” worthy birthday party. For those who know me, this is laughable. I’ve never been one who has the patience to attempt anything like most of the “crafty” things you see on Pinterest. But it became my mission. After coming home several nights in a row to me “crafting,” I think Shawn was starting to worry about me!

After thinking about it one night (while crafting), I realized it was my on-going guilt manifesting itself in a new way. Maybe she would look back to pictures of that day and not blame me for her early entry into the world because of how fabulous the birthday party was. If I could make things pretty like a picture then it would fix everything else. I think it comes down to the fact that this was something tangible that I could control whereas I can’t control how quickly she gets better.

In thinking about other ways to celebrate Avery’s birthday, we also decided to do something special to give back to the place that saved Avery’s life – the Cook Children’s NICU. Plain and simple, without the NICU, we wouldn’t have a birthday to celebrate. And so, our family made a donation to the NICU that allows us to have a plaque with Avery’s name on it outside of her room. We used to joke that she deserved a plaque outside that room because she stayed there so long. Now, thanks to my very generous parents, she has one. It’s my hope that her story will inspire and provide hope for others who come to stay in that room.

And so, while I can’t control how quickly Avery gets better, I can control how I use our experience to others who have similar journeys. Thank you all for following Avery on her’s.

Avery's Journey:

• Avery's journey - part 1
• Avery's journey - part 2
• Avery's journey - part 3
• Avery's journey - part 4
• Avery's journey - part 5
• Avery's journey - part 6
• Avery's journey - part 7
• Avery's journey - part 8
• Avery's journey - part 9

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!

Avery's Journey:

• Avery's story - part 1
• Avery's story - part 2
• Avery's story - part 3
• Avery's story - part 4
• Avery's story - part 5
• Avery's journey - part 6
• Avery's journey - part 7