By Jeni Arganbright, registered nurse in the CHOC Children’s pediatric intensive care unit
As a premature baby I experienced a severe lung complication that would go on to affect my early years of childhood. When I was 9 years old, I acquired eosinophilic pneumonia, a disease where a type of white blood cell accumulates in your lungs and makes it difficult to breathe. This led to some serious respiratory problems for me. My parents brought me to the hospital, where I was admitted to the pediatric intensive care unit (PICU). I had to be intubated, which means that my doctors inserted a tube through my mouth and into my airway to help me breathe. I stayed in the PICU for a month before my breathing was stabilized and I was fully recovered from the pneumonia. I later had another serious bout of this same health complication with similar results.
Since that time, I have been fine and never acquired such serious respiratory health issues. During my two stays in the hospital as a young child I was left with a tremendous amount of appreciation for the nurses that cared for me. What impressed me the most was the sincerity in which they offered their medical care for me, on both a personal and professional level. I was not just another patient for them to care for, but someone they had a deep concern for, and someone for whom they lovingly offered support. I remember the nurses worrying with my parents about my health, as well as celebrating my good days and eventual release from the hospital. I later thought what a wonderful opportunity to be in a profession where someone could come to work every day and offer sincere and caring support for both a small child as well as their family members. I wish all parents knew how much we care and also share in their emotional worries about their child.
My advice to new nurses is to do your job with the highest level of professionalism combined with openly expressing your sincere care and concern for the child and his/her parents.
By Katelyn Meitler, a registered nurse in the pediatric intensive care unit at CHOC Children’s Hospital, and graduate of CHOC’s RN Residency Program
The RN Residency Program at CHOC Children’s is an intensive 17-week program designed for new nursing graduates to help them successfully transition to becoming a professional pediatric nurse. I applied for this program because I knew that I would learn how to deliver safe, independent, timely nursing care; and how to serve as an advocate for my patients and their families. However, I learned so much more than that from my fellow new nursing graduates, from the patients and their families we were lucky enough to care for, and last but not lease from the experienced nurses who patiently and thoughtfully helped us gain hands-on experience. At our graduation ceremony, I shared these unexpected lessons with my fellow graduates.
“Learn everything you can, anytime you can, from anyone you can.”
I think most of us would agree we have learned more about what it means to be a nurse in the last four months than in the previous four years of nursing school. Here are just a few lessons I’ve taken to heart during residency.
I’ve learned to care for patients the way I would my children to be cared for.
I’ve learned if you are not ahead in your tasks, you’re behind.
I’ve learned it’s okay to say, “I don’t know.”
I’ve learned to make sure my IV fluids are actually dripping before I walk out of the room.
I’ve learned that the less time I have, the more I get done
I’ve learned it’s okay to ask for help when you feel overwhelmed.
I’ve learned to listen to parent’s concerns and take them to heart. They always know their child the best.
I’ve learned it’s okay to grieve with parents when they receive bad news.
I’ve learned it’s okay to cry and show that you are human.
I’ve learned a hug goes a long way.
I’ve learned that death never gets easier no matter how many times you witness it.
I’ve learned that crying doesn’t show weakness, it shows compassion.
I’ve learned that death is what makes life so beautiful.
I’ve learned that all people cry and smile in the same language.
I’ve learned a smile costs nothing but gives much. It enriches those who receive without making poorer those who give. It takes but a moment, but the memory of it sometimes lasts forever.
I’ve learned that coffee grounds in a bowl make a patient’s room smell significantly better.
I’ve learned the importance of self-care.
I’ve learned to fill up my cup of joy so that it overflows onto the saucer for others to drink.
I’ve finally learned what makes me gag…snot.
I’ve learned the truth about what Gandhi said, “The best way to find yourself is to lose yourself in the service of others.
I’ve learned to listen.
I’ve learned that some days you feel like you conquered the world and other days like the world conquered you.
I’ve learned there is always tomorrow to try it again.
I’ve learned how much I don’t know.
I’ve learned to laugh at myself.
I’ve learned that nursing is extremely hard, but I’ve also learned that that is what makes it so incredibly rewarding.
I’ve learned many lessons through the last four months but one of the most important lessons is…. I’ve learned that I will never stop learning.
Even after six miscarriages, Gladys Salazar and Paul Gomez kept hoping and believing that they would be blessed with a baby. At long last, the dream came true—twice—with the births of Bethany and then Tiffany. “Two miracle babies,” says Gladys.
Bethany has been battling several rare metabolic and mitochondrial disorders since birth, and Gladys and Paul are grateful for the care she receives at CHOC Children’s. Tiffany was cared for at CHOC as well. Unfortunately, her life was cut short by brain cancer. Still, her parents are grateful for the doctors who extended Tiffany’s life and all of the compassionate people at CHOC who supported them through a painful experience.
Tiffany was initially treated at another hospital, but her tumor didn’t respond to treatment. When it appeared that Tiffany was out of options, Gladys and Paul decided to “focus on making memories with her.” Through the Make-A-Wish Foundation, the family enjoyed outings to Knott’s Berry Farm and Disneyland.
On one of those outings, Tiffany’s color changed, she couldn’t hold anything down and had trouble breathing. An ambulance was called, and when it arrived Gladys went with her instincts and instructed the driver to take them to CHOC. “We made up our minds to let God do what needs to be done,” says Gladys.
At CHOC, Tiffany was examined by pediatric neurosurgeon Dr. Joffre Olaya, who determined that the tumor was growing and causing pressure. He recommended surgery to debulk the tumor. “I was crying,” recalls Gladys, “because I didn’t think it was an option. He said there were risks but that it could be done. The other hospital told us it was out of the picture.”
The difficult operation took five and a half hours. “Dr. Olaya told me he really had to fight to keep my daughter alive,” says Gladys. “He did an amazing job.”
Tiffany spent about a month recuperating in the pediatric intensive care unit (PICU). She spent four days with heightened breathing. “One of the doctors watched her breathe and said she was a real fighter; strongest diaphragm he’d ever seen,” says Gladys.
Sadly, however, complications developed. “Tiffany was in pain, and couldn’t tell us,” Gladys says. “We met with the palliative care team and decided to take her home. We got to celebrate her third birthday with a fiesta. There were Mariachis and the whole thing. We told everyone, ‘Come celebrate the lives of our daughters.’ We also participated in the CHOC Walk in the Park to help CHOC Children’s. We are so thankful that we got to spend six more months with our little Tiffers. It was all thanks to Dr. Olaya, thanks to CHOC, and thanks to God who brought us here.”
Tiffany was admitted to CHOC one last time, where she passed away peacefully. “But it was hard. After six miscarriages, you think, now this, too?” says Gladys. “But Paul said, ‘God gave us our daughters; we can’t be disappointed.’”
“Tiffany was an angel; she brought joy to countless people. I’m so glad we got the opportunity to meet her. She changed me in many ways. Cancer makes you see things differently. Tiffany’s in good hands now; she’s not hurting anymore.”
Gladys thinks of the team at CHOC as family. “We’ve been to a few hospitals before and there’s no comparison to CHOC,” she says. “Just the love and compassion they show towards the
patients. The doctors, the nurses, the social workers, the chaplain…they all care for you so much. Even the people who do the cleaning, and security—everyone is so polite. There was one nurse who was a mom and grandma, and she was so comforting―she felt like a mother to me. For her, it isn’t just a job, she totally loves what she does. Another nurse, near the end, put a little beanie on Tiffany’s head to help keep her warm. I was so touched by her kindness. I am really grateful for coming here.”
The Gomez family continues to rely on CHOC—Bethany has been hospitalized twice since Tiffany passed away. “One doctor said to me, ‘I’m sorry to you have to go through this now,’” said Gladys. “It was so touching. They know us very well; not like a number, like family.”
When Rayaan was 16 months old, he caught a simple cold. He had a typical low-grade fever and slept more than normal. I figured he needed the rest and would feel better the next day. The next morning, he was having a difficult time waking up so I thought I should take him to his pediatrician. She recognized something was very wrong and described him as being “unresponsive.” He was immediately transported to CHOC Children’s via ambulance. CHOC’s emergency department team was waiting for our ambulance and ready to care for Rayaan as soon as we arrived. They quickly assessed him and then placed him on a ventilator as he was brought up to the pediatric intensive care unit (PICU).
His care team ordered an MRI of his brain and diagnosed him with Acute Disseminated Encephalomyelitis, also known as ADEM. This means there was widespread inflammation in his brain and spinal cord that damages the myelin, which is a protective covering for nerve fibers. ADEM had affected over two thirds of his brain. We didn’t know it yet, but we would be at CHOC for the long haul.
Over the course of the next six weeks, Rayaan received multiple types of treatment for ADEM. His care team was vast, and included many different specialties: Dr. Nguyen Pham, a pediatric otolaryngologist (ear, nose and throat specialist or ENT), Dr. Gregory Wong, a pediatric gastroenterologist, Dr. Sharief Taraman, a pediatric neurologist, in addition to infectious disease specialists, in-patient physical and occupational therapists, a respiratory therapist, and the feeding team. He was in a coma and on life support for three weeks. During this time, his doctors kept a very close eye not only on him, but also on our entire family. Dr. Nick Anas, CHOC’s physician-in-chief; Dr. Jason Knight, medical director of emergency transport services; Dr. Paul Lubinsky, associate PICU director; and critical care specialists Dr. Juliette Hunt, Dr. Anthony Cherin and all of our nurses became family to us. I remember when Dr. Anas came to check up on Rayaan and he asked me when was the last time I layed next to Rayaan, I replied it’s been a while, and he ordered the PICU staff to transfer Rayaan from a crib to a full-size bed immediately, so I could lay next to my son. Rayaan was connected to every machine and monitor you can imagine, but his doctor was keeping my feelings in mind.
During this extremely difficult time when we were waiting for him to wake up, we were fortunate to have a wonderful support system. The Ronald McDonald Family Room let us escape for a few minutes, occaisionaly breakfast and lunch was provided by generous donors, and my daughter who was only three years old at the time was taken care of by child life specialists, while a social worker and case manager were assigned to us to provide us with counseling. This period was the hardest thing we had ever dealt with in our lives.
After three weeks of being in a coma, Rayaan began showing signs of waking up. He began by slightly moving his hands and arms. A few days later, we noticed his eye partially open. It would take him almost two weeks to be fully awake. Although he had woken up from his coma, his journey was just beginning. The inflammation in his brain caused severe brain trauma and he lost his speech, and his ability to walk, eat, swallow and drink. While he was still in the hospital, a feeding tube was placed, as his oral muscles were to weak to swallow and chew. After his discharge, the rehabilitation team came in to ensure he would relearn the basics. Nicole Well, a speech language pathologist at CHOC, taught my son how to talk again. A feeding therapist named Polly provided electrical stimulation feeding therapy to make his muscles strong enough again to be able to eat, drink and swallow on his own.
Rayaan endured several surgeries and procedures during his hospitalization, and even more after his discharge and as well as multiple visits to the emergency department at CHOC. The CHOC specialists always worked so hard on Rayaan as if he were their own child. I am very grateful to CHOC for saving his life and I know that the comprehensive care we received at CHOC we wouldn’t have been able to get anywhere else.
Today, four years later, Rayaan is in Transitional Kindergarten and still undergoes multiple therapies in the effort to make a full recovery from his illness. He remains under the care of CHOC specialists. I am inspired every day by his strength and his courage to overcome so much at such a young age. Above all, our family is grateful for CHOC, who has provided him with the comprehensive medical care throughout his journey.
The first time Chaplain Steve came to CHOC Children’s, he had just found out his daughter Catie needed an emergency neurosurgery. Now, he’s back for good― as the newest chaplain on CHOC’s spiritual care team.
Ever since pre-school, Catie had experienced difficulties with body awareness, some motor skills, coordination, attentiveness in school and other challenges that didn’t seem to fit her developmental stage.
For five years, Steve and his wife Claudia explored everything: psychiatry, ophthalmology, behavior modification, medication, coaching, neurofeedback and more. Finally, when she was 8 years old they advocated for a referral to a pediatric neurologist, rule out the possibility that there was something wrong with her brain. Even though Catie didn’t show any of the physical symptoms typically associated with a mass in her brain, such as headaches, seizures, fainting or major motor problems, their neurologist ordered an MRI just to be safe.
After five years of trying new therapies and hitting dead ends, Steve and Claudia didn’t know what to expect from Catie’s MRI results, or if they were finally about to get answers.
Catie’s scans revealed that she had a large arachnoid cyst in her brain. The fluid-filled sac measured 10 centimeters, about the size of a baseball.
“I was in shock” Steve says of the moment his wife called him with the results. “I remember exactly where I was and exactly what I was doing at that time. I remember begging my wife, “Please tell me you’re kidding. Please tell me you’re kidding.”
“He told us that this was serious, but that they were going to take care of it right away,” Steve recalls. “He explained very clearly what he was going to do to drain the cyst and how he was going to do it.”
Steve and Claudia didn’t understand how a cyst could have been growing for years inside her skull undetected.
“Although Catie hadn’t yet shown physical side effects, she inevitably would have begun to decompensate, which would’ve greatly increased her risk of injury,” said Dr. Loudon.
Since Catie is the oldest child in her family and the first to undergo a major surgery, her parents were naturally worried, about everything from anesthesia to recovery
“Dr. Loudon told us that he would care for our daughter as if she were his own child,” Steve says. “Since working at CHOC, I’ve heard him tell other families in the emergency department the same thing. I know that he means it every time.”
Dr. Loudon performed a series of surgeries to open the cyst and allow it to drain internally, a procedure known as endoscopic cyst fenestration. He made a small cut in her skull and then punctured a tiny hole on either side of the cyst to allow the fluid to drain internally over a period of time.
Dr. Loudon’s commitment to Catie’s safety was deeply appreciated by her parents.
“I saw the way his team acted, and how they interacted with my daughter,” Steve recalls. “Dr. Loudon takes his job very seriously and he goes after the problem. We knew she was in good hands.”
With every hospital stay, Steve found that his own natural instinct was to offer support to other parents, whether it be in the waiting room or the pediatric intensive care unit (PICU). By this point, Steve had been a chaplain in a hospice setting for six years.
“Even while we were the ones receiving care, my first reaction was always to rush to other families in need, but since I was there as a parent, there was only so much I could do,” he says.
Now that Chaplain Steve has officially joined the spiritual care team at CHOC, he is able to offer spiritual and emotional support to patients and families.
“I have my own beliefs and faith traditions, but these come secondary to what a family needs in a time of crisis,” Steve says.
Today, Catie is a high school student who loves science, space and kids. She hasn’t been hospitalized since her last surgery, although a few years ago she came back to CHOC with a broken foot that she got “pretending to be a ninja,” as her dad says. She still treasures the Choco bear that she received when she was a patient, but sometimes loans him to her little brother if he’s feeling under the weather.