From hotline to surgery – How CHOC guided a family through an emergency during COVID-19

As the parent of a child with gastrointestinal issues, Kris wasn’t immediately concerned when her son Nolan complained of a stomachache while they were watching TV together. When his pain quickly got worse and Nolan started to vomit, Kris knew it was time to call CHOC.

“With COVID-19 going on, I didn’t know if the pediatrician’s office or emergency room was the best place to bring him. I didn’t want to take a spot in the waiting room from someone who needed it more than us,” Kris said.

Nolan_with_Kris
Nolan with his mom Kris

Luckily, Kris had noticed on social media that CHOC had implemented a COVID-19 hotline staffed by a team of registered nurses. She called the hotline for advice on where to safely seek care for her son during the pandemic.

“As the parent of an immunocompromised child, I knew CHOC could help,” Kris says. “A nurse took our call, and within a few minutes we were on a Zoom video call with a doctor. She gave us very clear parameters of what to watch for and when to call back. Nolan’s symptoms got worse, and when we called back, we were immediately patched through to a video call with a pediatrician.”

Dr. Lori Openshaw, a CHOC Children’s pediatrician, spoke with Kris and Nolan via video chat. After taking a medical history, Dr. Openshaw was able to walk Kris through doing an abdominal examination on Nolan, while the physician closely observed via video. With Kris’ help, Dr. Openshaw better understood the location and intensity of Nolan’s pain, and what might be causing his symptoms.

“Dr. Openshaw told me exactly what to do. She told me where to push on his stomach and where not to push. She paid attention to Nolan’s facial expressions during the exam,” Kris says.

Dr. Openshaw highly suspected that Nolan may have appendicitis and needed an urgent surgical evaluation. She directed Nolan and his mom to get to the Julia and George Argyros Emergency Department at CHOC Children’s Hospital quickly.

“By the time we got to CHOC, they were ready for us,” Kris says. “Dr. Openshaw had called the emergency department and told them we were coming. She gave us instructions to wait in the car at valet, and a staff member would come to the car and ask for our name. It was clear that everyone from valet to security was following protocol implemented to keep people as safe as possible during this pandemic.”

Nolan’s room in the emergency department was ready and waiting for him. He and his mom noted how everyone in the emergency department, and the medical unit to which he was admitted overnight, was calm and collected, which in turn helped them feel calm during a stressful health emergency.

Although Nolan has been a patient at CHOC many times before, he and Kris noticed that a few things were different about this trip to CHOC. To protect the health of patients, families, doctors, nurses and staff during the pandemic, CHOC had implemented a variety of safety measures. Kris and Nolan noticed that everyone underwent a health screening before entering the hospital, people wore masks (and more protective equipment when necessary), social distancing measures were in place with people staying 6 feet apart whenever possible, and additional cleaning measures were carried out on top of CHOC’s already stringent cleaning practices.

“Seeing people go above and beyond to keep patients safe, healthy and comfortable during this time is what makes CHOC so different and so special,” Kris says.

Testing confirmed Nolan did indeed have appendicitis, and his surgery was scheduled for the next morning with  Dr. Mustafa Kabeer, a pediatric general and thoracic surgeon. Surgery was a success.

Nolan_aftersurgery
Nolan was in good spirits while recovering from surgery.

Nolan appreciated that staff made him feel as comfortable as possible during his stay.

“CHOC sees you as a person, not just a patient,” Nolan says. “Everyone explained to me what would happen and what medicine I would get. They made it easy for me to understand what was going on, which made the process feel smooth.”

Having a hospitalized child during a pandemic isn’t something Kris envisioned, but she knew Nolan was in good hands.

“It gave me peace of mind that there was consistency in protocols from each area of the hospital that we interacted with,” Kris says. “Everything was well thought out, and it was clear that everyone had bought into the changes being implemented throughout the hospital.”

Kris noticed that staff were reminding each other of changes in protocol, which further reassured her that the hospital was a safe place.

“Hearing nurses and other staff remind each other of things – whether that be a change in protocol, or where an item had been moved to – reassured me that the decisions CHOC had made to keep people safe were being upheld throughout the hospital.”

Nolan shares in his mom’s appreciation for CHOC.

“You never want to be sick, but if you’re going to be sick, you want to be sick at CHOC,” he says.

Nolan only had to stay at CHOC one night after surgery for observation and went home the next day. Dr. Openshaw, although not Nolan’s primary pediatrician, called several times to check up on him after surgery.

“Dr. Openshaw’s care and follow-up made us feel comfortable and assured,” Kris says.

Today, Nolan is back at home, getting reacclimated to distance learning while his school is closed – he’s also learning how to cook and do laundry before he heads off to college in the fall.

Kris is happy to have this health scare behind them, but grateful she knew who to call when her son was sick.

“CHOC has always known what is best for my child. No matter what is going on around us – even a pandemic – doing what’s best for my child will always be CHOC’s priority,” Kris says. “I knew the only place I would trust information from during this time was CHOC. The fact that they had set up a COVID-19 hotline for parents was just another sign that they are always three steps ahead in every situation.”

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My son’s journey with congenital pulmonary airway malformation (CPAM)

By Monica Cruz, mother of CHOC Children’s patient Tavik

When my fiancé Ryan and I found out we were having another baby, we were excited but also a little overwhelmed. Our firstborn son Raiden was barely a year old and very strong willed. We weren’t quite ready for another, but we knew we could manage.  We had no idea the journey that lay ahead of us and our new baby, but today we are so grateful that he’s healthy and happy.

Tavik_after_CPAM_surgery
I am so grateful that my son is happy and healthy, after surgery to remove his CPAM.

During an ultrasound when I was 26 weeks, my OB/GYN found a mass on the baby’s lung. They said it was likely congenital pulmonary airway malformation (CPAM). CPAM is a mass or lesions of abnormal lung tissue that forms during pregnancy. The mass or lesions can vary in size. It is usually only in one lung and does not function as normal tissue. We did two more ultrasounds to confirm the diagnosis, and then we were referred to a maternal-fetal medicine specialist (MFM).

Our MFM confirmed that our baby, who we named Tavik, had CPAM.  The cause of this condition is unknown and only 1 out of 25,000 pregnancies are affected. Research shows that this abnormality is not related to anything the mother did or didn’t do during pregnancy. Some think it may be caused by genetics, but there isn’t enough research to confirm this. CPAM was previously referred to as congenital cystic adenomatoid malformation (CCAM).

There was still a lot of time left in my pregnancy, so Tavik’s lungs had more time to grow—but so did the mass. On the ultrasounds, we could see that his heart had been pushed off to the right side. This was a lot to take in and made the next few months extremely stressful.

Babies in the womb who have CPAM are also at risk for hydrops fetalis, or hydrops. When a fetal lung mass pushes on the heart and blood vessels, the heart has trouble pumping blood. If the heart can’t keep up with the baby’s needs, fluid builds up around the lungs and in the belly, a condition called hydrops fetalis. After the baby is born, the fetal lung mass can cause problems because it can get infected (pneumonia) or take up room so that the healthy lung lobes can’t fill with air. I had ultrasounds every two weeks until Tavik’s due date.

Prenatal counseling

We knew Tavik would need care after he was born, so our MFM referred us to Dr. Peter Yu, a pediatric general and thoracic surgeon at CHOC who has special training and expertise in fetal conditions.

My fiancé and I went to CHOC and met Dr. Yu, who explained everything that was going on with the baby in utero, and what would happen after he was born.

The good news was that most babies with CPAM are born with no symptoms and can go home after a few days in the hospital. Surgery to remove the mass on the lung usually comes a few months later, when the babies are bigger, and better able to handle anesthesia. If CPAMs are not removed, they can cause breathing problems or serious lung infections, and sometimes they can even become cancerous later in life.

Dr. Yu was honest with us and educated us that there are some babies who do have complications at birth due to the CPAM and can need immediate surgery after delivery. Not knowing what that outcome would be was one of the hardest things I’ve ever had to process.

Dr. Yu was so knowledgeable and made us feel more at ease about our baby’s diagnosis. We knew that Tavik was in great hands.

Tavik’s birth

Tavik was born on Nov. 15, 2018 weighing 7 lbs., 10 oz. and 21 inches long. We were so lucky and beyond happy that he came out without any complications, and that he didn’t need immediate surgery. Unfortunately, later that night when the doctors came back to check in on us, they noticed he was working extra hard to breathe. They weren’t sure if this was related to his CPAM. He was admitted to the neonatal intensive care unit (NICU) at the delivery hospital and was given oxygen and put on CPAP (continuous positive airway pressure). CPAP delivers constant air pressure into a baby’s nose to help the air sacs in the lung stay open and prevent sleep apnea.

During our NICU stay, doctors performed a chest X-ray and ultrasound to get a better picture of the mass in his lung. They noticed he also had an abnormal blood vessel carrying blood to the lung mass.

Tavik spent eight days in the NICU before he was healthy enough to go home. The doctors determined that his breathing troubles at birth were not caused by the CPAM. He just had some residual fluid from the C-cection.

Two weeks later, we had an appointment with Dr. Yu so he could meet Tavik and we could make surgery plans. A few weeks after that, Tavik had a CT-scan so Dr. Yu could see exactly what was going on inside Tavik’s lung. That gave Dr. Yu a more precise roadmap for surgery.

Surgery day

When Tavik was three months old, he underwent surgery at CHOC Children’s Hospital. It was scary to hand over my baby for surgery, but looking back now, everything seemed to go so smoothly and quickly.

family before cpam surgery
Ryan and I with Tavik before surgery to remove his CPAM.

During the three-hour surgery, Dr. Yu removed the affected part of Tavik’s lung and repaired the blood vessel. While surgery was in progress, a member of Dr. Yu’s team came out to the waiting room every 30 minutes to provide an update to Ryan and me.

When surgery was over, Dr. Yu came out to let us know that he had removed half of Tavik’s left lung, sealed off the artery, and everything had gone smoothly. He showed us photos of what he had been looking at through his scope during surgery.  He did this to also give us a better understanding of what had been going on inside of our son. It was really neat to see.

Dr. Yu performed the surgery thoracoscopically, using minimally invasive instruments. Only three very small incisions had to be made in Tavik’s abdomen to remove the entire mass. Tavik only has three tiny incisions on his left side. It’s mind-blowing to think that you can safely remove half a baby’s lung through three tiny incisions. Since Tavik had this surgery as a baby, the remaining portion of his lung will be able to grow and compensate for what was removed as he grows.

Tavik_minimal scarring_cpam
Dr. Yu performed the surgery thoracoscopically, using a microscope and two tools. That means only three very small incisions had to be made to remove the entire mass.

Tavik spent only three nights in the hospital. The first two days after surgery were hard for Tavik; he was groggy from the anesthesia, and he made some sad sounds, which was a little heartbreaking for us to hear as parents. Thanks to the awesome rooms at CHOC I was able to stay with Tavik the entire time, both day and night. During this time, I stayed with Tavik, while Ryan and Raiden stayed close to CHOC at the Ronald McDonald House. We had stayed there during our unexpected NICU stay, and they invited us back during Tavik’s surgical stay. Without them, our family wouldn’t have been able to stay together and so close to Tavik.

By the third day after surgery, Tavik was alert, smiling and getting right back to his happy self. It’s seriously amazing how fast babies heal! I was a little nervous getting ready to leave on the fourth day. The doctors constantly reassured me by telling me that he was healing wonderfully and that he was in great shape to head home. They were right. By the next day, Tavik was doing even better—he had no pain or discomfort and his incisions were already fading. You would have never known that he just had a major surgery.

A few weeks later, we had a follow-up appointment with Dr. Yu, who confirmed everything still looked great and Tavik was now CPAM-free.

tavik-dr-yu-cpam-surgery
Tavik with his surgeon, Dr. Peter Yu.

Tavik today

Although Tavik underwent a major surgery as a baby, looking at him now, you’d never know what he had been through. You can barely see his scars, and he’s growing like any little boy should—he’s in the 80th percentile for height and weight. His prognosis is great, and we look forward to a normal life with him.

tavik-birthday-cake
Tavik enjoying cake at his first birthday party.

My son is such a sweet, loving, happy boy with a little bit of spice to his personality. He absolutely loves music and always wants to play in the water. He has so much fun going on walks with his older siblings Leila and Raiden.

Tavik is our little miracle baby! He has kept us on our toes since before he was born and continues to do so today. He’s always making us laugh and smile.

We are so blessed and are so grateful that he is healthy.

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    Fighting through GERD: Bowie and Finley’s story

    From the very beginning, Melissa and Kris knew their twins were fighters—they were also a surprise; the couple hadn’t been sure if they were going to be able to have more children.

    “We knew these twins had a purpose and a reason. From the very beginning of their lives, they were a miracle all around.”

    Melissa experienced hyperemesis gravidarum also known as HG, a rare condition characterized by extreme nausea and vomiting. Most pregnant women experience morning sickness, but less than 3% experience HG, which can lead to near-constant vomiting, dehydration, weight loss and malnutrition.

    “From the second I was pregnant, I was extremely ill. The three of us shouldn’t have lived through my pregnancy, but we did,” Melissa says. “The twins are little fighters. From the womb until now, they’re just little fighters.”

    Her body was so depleted that she was put on extended bedrest and hospitalized on and off throughout her pregnancy. She needed a PICC line, or peripherally inserted central catheter, for two-thirds of her pregnancy. PICC lines are sometimes needed when intravenous (IV) medications are required over a long period of time.

    “The babies were getting all their nutrients from me, and I was so sick. It was really scary,” she says. “One night while on hospitalized bedrest I needed four blood transfusions. My body was shutting down. The babies were ok through everything—the blood transfusions, me getting IVs, copious amounts of potassium, medications, everything. They just kept going.”

    Showing signs of gastroesophageal reflux disease (GERD) 

    A few days after they were born, Bowie and Finley started showing signs of gastroesophageal reflux (GER). This occurs when a small amount of acidic stomach fluid or food in the stomach goes back up into the esophagus or swallowing tube. Two-thirds of healthy infants experience gastroesophageal reflux.

    When the reflux causes intolerable discomfort or complications, children may be experiencing gastroesophageal reflux disease (GERD). Nurses at the delivery hospital told the parents the babies were spitting up and throwing up more than they should be. By the time they went home a couple days after they were born, they had lost a bit more of their birth weight than they were supposed to. Melissa and Kris’ older children Scotlynd and Kingston had GER when they were younger, so they thought they knew what to expect.

    Bowie and Finley Lyman’s first photo with their parents.

    Most cases of GER resolve without medication. In rare cases, treatment of GERD requires surgery.

    “The older kids just got through it and was never life-threatening,” Melissa said. “With the twins, it went from ‘all babies spit up, they will be ok like their siblings’ to failure to thrive and life-threatening episodes.”

    Each twin had life-threatening episodes of GERD. Melissa recalls an especially frightening night with Finley.

    “After one middle of the night feeding, Finley threw up and that time, I wasn’t sure if she was ok. I went back in her nursery to check on her and she wasn’t breathing. It was the most terrifying moment. She was limp. I screamed for my husband. We tried everything to wake her up.”

    Their pediatrician referred them to CHOC pediatric gastroenterologist Dr. Greg Wong. The two physicians worked together to improve GERD symptoms. Despite trying to change feeding times, amount and type of formula, and medication, the symptoms just weren’t going away. 

    For Bowie and Finley, pictured here, GER runs in the family. Their older siblings had experienced GER but unlike the twins, they didn’t suffer from GERD or require surgery.

    “We wanted to stay within the CHOC network. That was important to me because our older son had been treated at CHOC, and we fell in love with the CHOC family,” Melissa says. “We know how not only wonderful and caring they are, but from a medical perspective too. We wanted the best for them and we felt CHOC was the best.”

    Bowie and Finley’s path to surgery

    The family hadn’t wanted to prematurely jump to surgery as an option, but in the end, it was the right decision. They were referred to Dr. Peter Yu, a pediatric general and thoracic surgeon at CHOC.

    “Dr. Yu made us feel so comfortable. He really knew what he was doing,” Melissa said. “The CHOC team felt that we had exhausted all other options, and that surgery was the best option for the twins.”

    Bowie and Finley underwent surgery when they were about 6 months old. Dr. Yu performed a minimally invasive procedure known as laparoscopic Nissen fundoplication to repair the twins’ GERD. At the same time, he repaired their hernias.

    “They are not identical babies, but they had identical surgeries,” Melissa says.

    Surgery was performed on one baby at a time. Afterwards, they were brought to recovery rooms right next to each other, so one parent could be with each twin, and they could be close by.

    “Before surgery, the babies were so sickly,” Melissa said. “After surgery, they are completely different babies.”

    The twins are now feeding, growing and thriving. One of many benefits of this surgery has been less laundry. Melissa and Kris used to have a full hamper of laundry every day because the twins went through clothes and sheets so often.

    Celebrating holidays in the hospital

    Melissa’s birthday was the day after surgery.

    “It was another birthday spent in the hospital, but it put things in perspective,” she said. “The best gift I could’ve gotten was for them to be healthy and thrive again. You think about the important things, and everything else fades away.”

    Helmet therapy and physical therapy

    Part of the family’s efforts to control the twins’ side effects of GERD had been to keep them in one position to limit their acid reflux. Because of this, they weren’t able to do tummy time which helps prevent flat spots on the back of the head.

    After surgery, Finley and Bowie wore helmets for three months that helped correct the growth and shape of their skull.

    Because of GERD, the twins’ backs were strong, but their cores and trunks were weak. They are in physical therapy to strengthen their bodies and help them roll and move around using the correct muscles.

    A message to other moms

    Melissa’s advice for other moms taking care of babies with GERD is to just keep asking questions and remember that every baby is unique.

    “There are a lot of levels of GERD, and I didn’t know how severe it could be until it happened to us,” she said. “I learned not to compare my babies to anyone else’s. Every kid is different.”

    She added that this experience taught her that trials are temporary, and things will get better.

    “Even in the heart of it when you can’t get through another day, and you have to take it minute by minute,” she said. “I always say it’s only temporary. It might not get better right away, but it will.

    Celebrating milestones

    Last Mother’s Day, Melissa was on bedrest in the hospital, days away from giving birth to her twins. This year, she’s looking forward to celebrating her family being complete—and healthy.

    The Lyman family

    “You have to look back and see where you’ve come from to see how wonderful it is. Last year wasn’t this way. I spent last Mother’s Day with them in the hospital preparing to give birth,” she recalls. “It’s amazing to see how far we have come in a year. We are moving forward, and we can truly enjoy them and enjoy our time as a whole family.”

    The twins’ first birthday falls right after Mother’s Day. The family is planning a big celebration in their neighborhood.

    “We want to include everybody that was there for them from my pregnancy through the first year of life,” Melissa says. “We want to celebrate that they made it and thank everyone for their help. Everything has been so up and down and up and down, and now were in the clear.”

    VIDEO: CHOC Docs answer common questions about surgery

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    Stella’s Journey with Bronchopulmonary Sequestration (BPS)

    By Sharlene Ramsingh, mom of CHOC Children’s patient Stella

    My daughter Stella first came to CHOC Children’s when she was just a baby, but our journey really started before she was even born. At my 20-week ultrasound, my husband Havinder and I were so excited to find out the sex of our baby. We were having a girl!

    That excitement quickly turned into a feeling of unease when the physician noticed an abnormal growth in the baby’s lung area. From that point on, we had to go back to the doctor’s office for monthly and eventually weekly ultrasounds to monitor the size of the mass. After additional imaging, doctors diagnosed her with bronchopulmonary sequestration (BPS). This means that abnormal tissue or a cyst formed outside her lung but wasn’t connected to her airway.

    It was determined that the size of the mass wouldn’t affect delivery, and I was able to carry her to term and proceed with my birth plan. When Stella was born, there was a room full of doctors and nurses in case she wasn’t breathing. Time stood still when she came out and the room was so quiet. Everyone was waiting to hear her cry. And when she let out a tiny little sound, it felt like everyone in the room exhaled at once.

    Despite the mass on her lung, she was healthy, so we got to take her home a few days after she was born. Stella’s first few months of life were filled with a series of appointments and tests. When we met Dr. Peter Yu, a pediatric general and thoracic surgeon at CHOC, he was able to give us confirmation that Stella needed surgery to remove the mass. At that point, Stella had grown bigger and stronger and was better prepared for the anesthesia required for surgery. We knew that our daughter was in good hands with Dr. Yu. He was patient, caring and we really felt like our daughter was the most important thing to him.

    stella-mom-BPS-surgery
    Sharlene with her daughter Stella on the morning of surgery to remove her bronchopulmonary sequestration (BPS).

    Stella was just five months old when she underwent surgery at CHOC Children’s Hospital. Thankfully, surgery went perfectly, and the whole team was great. The pediatric anesthesiologist was amazing and able to deal with my daughter’s small veins.

    Before Stella’s diagnosis, I had never heard of BPS. During my pregnancy and up until the surgery I was part of a private Facebook group for parents of babies with BPS. Their success stories helped me manage the stress and anxiety that I experienced during this time. I was also able to ask questions to moms who went through the surgery and who had healthy kids. My husband and I were very private about her condition during my pregnancy, and only told our parents and siblings. We were dealing with our own emotions, and we just didn’t feel up to having to explain BPS over and over again. When it did come up, we would say she a birth defect that lead to a growth in her lungs, and that it would need to be removed.

    These days, Stella is doing amazing. She sprints around the house with her five-year-old brother on a daily basis, and she has a voice that will make the windows shake. She goes to swim lessons every week.

    stella-after-BPS-surgery-with-dog
    Stella continues to thrive after surgery to remove her bronchopulmonary sequestration (BPS).

    The worrisome portion of my pregnancy and Stella’s surgery seem like such a distant memory. You would never know by looking at my daughter that she ever had any complications.

    My advice to new parents facing an unexpected diagnosis is to take things one step at a time. Don’t get caught up in the negative thoughts that may happen and trust your child is in good hands with Dr. Yu and at CHOC. Always remember that this too shall pass.

    Meet our surgeons

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    Meet Dr. Saeed Awan

    CHOC Children’s wants its patients and families to get to know its specialists. Today, meet Dr. Saeed Awan, a pediatric general and thoracic surgeon. Dr. Awan attended medical school at Khyber Medical College, in Pakistan, and completed a surgery residency at Memorial University of Newfoundland & Labrador in Canada. He also completed two surgery fellowships, one at Royal College of Physicians and Surgeons of Edinburgh, in United Kingdom, and another at Royal College of Physicians and Surgeons in Canada. He has been on staff at CHOC for four and a half years.

    Dr. Saweed Awan
    Dr. Saeed Awan, pediatric general and thoracic surgeon at CHOC Children’s.

    Q: What are your special clinical interests?

    A: All aspects of pediatric and neonatal surgery, especially minimal invasive surgery. I also have expertise in liver and bile duct surgery and special interest in gastroschisis sutureless closure.

    Q: What are your most common diagnoses?

    A: Inguinal and umbilical hernias, hydroceles, undescended testes, appendicitis, lumps and bumps, as well as complex congenital pediatric and neonatal conditions.

    Q: Are there any new programs or developments within your specialty (at CHOC or in the broader field)?

    A: In the broader field, there has been remarkable advancement in minimally invasive surgical procedures with similar or better results than open surgical procedures.

    Q: What would you most like community/referring providers to know about you/your division at CHOC?

    A: We are a group of dedicated and highly trained pediatric surgeons who strive to provide excellent care to our patients. We make sure both parents and the patients are involved in the decision making. Being a father of four children, I treat my patients as I would like to have my own children treated.

    In addition to our common surgical conditions, I treat complex neonatal and gastrointestinal conditions.

    Q: What inspires you most about the care being delivered here at CHOC?

    A: I’m inspired by our CHOC physicians, our excellent nursing and support staff, our wide range of subspecialists, as well as our state-of-the-art facility.

    In our specialty, we meet a lot of children and the smiles on their and their parents’ faces after they have recovered from surgery, makes me very happy.

    Q: Why did you decide to become a pediatric surgeon?  

    A: I decided to become a pediatric surgeon when I was a third-year medical student. Pediatric general surgery is a field where you are able to take care of sick kids with a wide variety of surgical diseases. Although pediatric surgery is very challenging, it is very rewarding.

    Q: If you weren’t a physician, what would you be and why?

    A: I might have been a pilot as I like travel.

    Q: What are your hobbies/interests outside of work?

    A: Travel, soccer and spending time with my children.

    Learn more about pediatric surgery at CHOC

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