text:
Marian Molthan, MDDr. Marian Molthan was the first pediatric cardiologist in Arizona, arriving in 1962. She was named Director of Cardiology at Phoenix Children's in 1983.
In the gleam of an eyeMy story starts way before PCH was even around, but Dr. Mel Cohen was and he saved my life.
I was 13 years old, the year was 1972 and diagnosed with severe kidney disease. There was no Childrens's Hospital in those days and very few nephrologists who understood children.
I was in a hospital ward with 13 other children all suffering from different illnesses, and residents taking care of us. There were no Child Life specialists, no video games, no TV.
PCH is the best thing to ever happen to Arizona. I thank God every day that Dr. Cohen was there for me and I am alive and well and working at Phoenix Children's Hospital because of the care and compassion I received from him.
This photo was taken last year at Goldfield Ghost Town. I am an old west re-enactor named Rascal.
Paul Baranko, MDDr. Paul Baranko was the first Pediatric Hematologist/Oncologist in Phoenix, arriving in 1973 and was the Hospital's founding Director of Hematology/Oncology (1983). Under his direction, the program became the Phoenix Children's Center for Cancer and Blood Disorders.
Dr. Baranko is now a volunteer with the animal assisted therapy program, and bringing smiles to our patients and families.
Lucy Hernried, MDDr. Lucy Hernried arrived in Phoenix in 1974 and became the hospital's first pediatric allergist/immunologist. She also received training in pulmonary medicine, serving as Co-Director of Pulmonary Medicine starting in 1983.
Terry Wood, MDA pediatric hematologist/oncologist, Dr. Terry Wood came to Phoenix in 1977 and joined Dr. Baranko as the second hematologist/oncologist at Phoenix Children's Hospital in 1983.
Becoming PCHThe idea for a Phoenix Children's Hospital was born in 1978 when members of the Maricopa Pediatric Society began discussing the need for a kids-only hospital. Phoenix was the ninth largest metropolitan area in the country with excellent healthcare facilities in some 23 hospitals.
But while most of them offered some type of pediatric care, the pediatricians knew this was not good enough. A children's hospital was needed.
On July 31, 1980, Phoenix Children's Hospital was incorporated and Allen L. Rosenberg was elected president of the 12-member board of directors. They had no facility yet, but they had a strong conviction that it was time to do right by Arizona's children.
"We wanted the children's hospital to be totally independent, with its own board, medical staff, and administration," said Rosenberg. Good Samaritan offered just that and was selected to house Phoenix Children's Hospital. This unique "hospital within a hospital" allowed Arizona to benefit from a tertiary pediatric center without unnecessary duplication of services and costs.
This is an early photo of Allen Rosenberg.
Founder Dr. Mel CohenMelvin L. Cohen, MD, was one of the first employed physicians of Phoenix Children's Hospital. He's one of the most important figures in the development of pediatric medicine in our community.
"We felt it was necessary to establish an independent children's hospital based on growth of the city and the development of pediatrics as a subspecialty," says Melvin L. Cohen, MD, medical director of Medical Education at Phoenix Children's and one of the Hospital's founding physicians. "We really were behind the times in developing a facility just for children."
"Mel is one of the most outstanding individuals I've ever met. He has made the single most important contribution to patient care in our community," says Aubrey Maze, MD, another of the Hospital's founding physicians. "He was truly instrumental in having the vision to do what was right for the pediatric patients in this community. He's the reason I came to Phoenix. If there is one person I look up to it's him."
Dr. Cohen was awarded the Health Care Heroes Lifetime Achievement Award by The Phoenix Business Journal in 2007.
Barry Fisher, MDIn 1979, Dr. Barry Fisher was the first pediatric pulmonologist in Phoenix. In 1983, he was named Co-Director of Pediatric Pulmonary Medicine for Phoenix Children's Hospital.
Aubrey Maze, MBChBDr. Aubrey Maze was Phoenix's first pediatric anesthesiologist, arriving in 1979.
At the Founding of Phoenix Children's Hospital in 1983, he was named Director of Pediatric Anesthesiology Department.
Dr. Maze served as President of the Medicine Staff from 2000 through 2001 and he continues to serve in leadership roles at Phoenix Children's Hospital today.
Our IncorporationIn July, Phoenix Children's Hospital, Inc. was formed as a legal entity, with Mr. Alan Rosenberg as president. This important step was the precursor to formal studies to establish the need and guide the organization of a new children's hospital for the Valley.
This photo depicts the first logo of the conceptual Hospital.
Roxanne Hecht, MDDr. Roxanne Hecht was the first pediatric gastroenterologist in the Valley, arriving in 1980. In 1983, she was named founding Director of Gastroenterology for Phoenix Children's Hospital.
Move to independenceDr. Dan Cloud began practicing pediatric surgery in 1955, and had also served as president of the American Medical Association. When he became CEO of Phoenix Children's in 1983, he convinced Chief Executive Officer, Steve Morris, of Good Samaritan, that the children's hospital should be independent from Good Samaritan, and negotiated with them to finally relinquish control over their pediatric beds.
Cloud was responsible for establishing Phoenix Children's Hospital as an accredited independent hospital in 1983, and later arranging for the incorporation of the Good Sam NICU into Phoenix Children's Hospital.
Dr. Cloud served as the Founding President of Phoenix Children's Hospital from 1983 until his retirement in December of 1990. He passed away on July 6, 2010, only one month before his 85th birthday.
This first photo is of Dr. Cloud at a luau at Dr. Melvin Cohen's home in about 1960.
The second photo show Cloud years later, when he was CEO of Phoenix Children's.
Founder Dr. David BeydaDr. David Beyda was the first full time fellowship trained pediatric intensivist. He came to Good Samaritin in 1982 from Johns Hopkins, just before Phoenix Children's was formed.
Founder, Dr. Melvin Cohen says about Dr. Beyda, "David came to Good Samaritan about six months before we became a hospital. He was the first intensivist here and developed the PICU [Pediatric Intensive Care Unit]. He's a strength not only in critical care, but he's a strong pediatric medical ethicist. He's an extremely dedicated supporter of underserved nations and travels all over the world to provide medical care."
Dr. Beyda is still with Phoenix Children's, and still spreads his compassionate care around the world.
A vision unstoppedAfter the Certificate of Need was denied, another opportunity presented itself.
Good Samaritan offered to locate the children's hospital within their own facility, providing the pediatricians with an operational base. Led by then Chief Executive Officer, Steve Morris, Good Samaritan spent more than $2 million to prepare and equip the hospital.
In 1982, pediatricians from St. Joseph's merged with pediatricians from Good Samaritan. But the group was still employed by Good Samaritan, unable to build a medical staff on their own, or create their own rules, regulations, and bylaws.
The next goal was a move to an independant hospital.
A Certificate of NeedIncoming president of the Maricopa County Pediatric Society, Albert D. Jacobson, MD, urges for supporting the establishment of Children's Hopsital.
"It is our hope that we will have unified pediatric support behind Phoenix Children's Hospital at the Certificate of Need hearing," said Dr. Jacobson.
"The pediatric society has been interested in the concept of a children's hospital for a number of years," said Jacobson. He served on one of the original committees set up by the society to study the need for a children's hospital in the area.
There was a great deal of determination to follow through to achieve an independent children's hospital.
However, during the Certificate of Need hearings, another existing hospital opposed the Phoenix Children's plan and presented their own case to expand pediatric beds on their campus. After three long days of hearings, the application was not approved. This was a devastating setback and further efforts to win a Certificate of Need were abandoned.
This photo is of Dr. Jacobson in 1982.
Allen Kaplan, MDDr. Allen Kaplan was Arizona's first child neurologist, bringing his expertise to Phoenix in 1975. Upon the establishment of PCH in 1983, he became Director of Child Neurology.
Dr. Kaplan continues to serve at Phoenix Children's Hospital today.
Ronald Christensen, MDDr. Ron Christensen served as the founding director of pediatric endocrinology at Phoenix Children's Hospital in 1983.
John McCallister, MDDr. John McCallister rounded out the staff of pediatric hematology/oncology joining Phoenix Children's Hospital in 1983.
Deborah Icenogle, MDDr. Deborah Icenogle joined Phoenix Children's Hospital at its inception as a pediatrician and a member of the Ambulatory Medicine Faculty.
Dean Smith, MDDr. Dean Smith, a pediatric anesthesiologist, arrived in Phoenix in 1982 and joined the Phoenix Children's Hospital medical staff as its second anesthesiologist in 1983.
Founder Paul BergesonAt the very start of Phoenix Children's Hospital in 1983, Dr. Paul Bergeson was named Director of Ambulatory Medicine and Co-Director of Medical Education.
PCH opens their doorsPhoenix Children's Hospital opened within Good Samaritan Medical Center on September 18, 1983 and operated as an independent hospital there for almost 20 years. Arizona's only hospital dedicated to caring for children featured 124 beds.
The first photo shows the sign and building in Good Samaritan.
The second photo shows a welder attaching the PCH sign outside the new hospital within a hospital.
Child Life StudyThe Child Life Department receives a grant to study interventions designed to help children cope with illness and hospitalization.
The national study at Phoenix Children's Hospital proved that children exposed to a Child Life Program experienced less emotional stress, displayed more effective coping, and showed a greater understanding of the hospital experience.
Learn more about the Child Life Department today.
First in Arizona
The first pediatric liver transplant in Arizona was performed at Phoenix Chidren's Hopsital. The patient - Kerry Etchechury - went on to live a full life because of this ground-breaking procedure. Kerry is pictured here with hers dolls and bears.
First Outpatient CenterThe Hospital opens a new, 53,000 sq. ft. Outpatient Center near Good Samaritan, expanding the Hospital's services and presence in the community.
Under the direction of Michael S. Clement, MD, the center housed specialty care services including a Child Development Center, Children's Cancer Center, Cystic Fibrosis Center, and the Crippled Children's Outpatient Clinic.
Total outpatient visits reaches 43,000.
Camp Rainbow created
Amid the tall pines of Prescott, Ariz., there is a place called Camp Rainbow.
For one week each summer, youngsters gather to do all the fun things kids do at summer camp: swim, fish, hike, ride horseback, make new friends, build lasting friendships, develop a sense of independence and self-confidence, and share once-in-a-lifetime experiences.
In 1985, the Phoenix Chapter of United Order True Sisters #58 in partnership with the Center for Cancer and Blood Disorders at Phoenix Children's Hospital, established a camp in Prescott for children of Arizona who have or have had cancer.
Hundreds of kids have come to Camp Rainbow over the years. In fact, since 1985, Camp Rainbow has grown from 27 children to more than 130. Each "Rainbow Kid" attends camp at no cost to the family.
The first photo shows an early photo of the campers and staff. The second photo shows two campers, Jimmy and Sarah. Learn more about Camp Rainbow.
1st TelethonPhoenix Children's Hospital's first major fundraising event, the Children's Miracle Network Telethon, raises $210,233 for the hospital's programs and services.
In 1993, the telethon raised $554,405.
Children's Miracle Network is a non-profit organization dedicated to saving and improving the lives of children by raising funds for children's hospitals across North America. Each year, the 172 hospitals in the network provide the finest medical care, life-saving research and preventative education to help millions of kids overcome diseases and injuries of every kind.
This national charitable effort is unique in that 100 percent of the money raised will stay in the community to support the local children's hospital, which means Phoenix Children's Hospital receives all of the funds raised in the northern two-thirds of Arizona.
This photo shows the telethon on-air with a patient and local celebrity host, Pat McMahon.
Learn more about the Chidren's Miracle Network.
Lindberg quadrupletsDanielle, Nicole, Marc, and Erica Lindberg are the first quadruplets to be admitted to the Newborn Intensive Care Unit in 1986.
David and Lucette Lindberg had tried for six years, without success, to start a family. Fertility specialists tried a then-experimental procedure called a low tubal transfer, cautioning the parents that there was only a 30-percent chance of a successful fertilization.
Given the odds, Lucette's doctor was more than a bit surprised to find, at first, that she had two babies growing inside her body. A third baby was discovered a few weeks later. Then the fourth one appeared.
They made it to 32 weeks, when they were born by Cesarean section.
At four weeks, Danielle and Erica were able to go home. Nicole followed a week later, and Marc was discharged at seven weeks, appropriately completing the family on Father's Day.
The Lindbergs became one of PCH's best-known success stories, appearing at many promotional events for the hospital. In 1996, they represented PCH as Children's Miracle Network champions and traveled to Washington, D.C. to meet President Clinton.
The first photo show the quads at 3-years-old, and the second one shows them at six-years-old.
Jeremy's heartJeremy Keck has had five open heart surgeries and 10 major surgeries, including a pacemaker that was placed in his heart. Now nearly 25 years old himself, he has been a patient at Phoenix Children's Hospital from the beginning.
After spending so much time at Phoenix Children's, the Hospital has become a second home to Jeremy and his family.
Today, Jeremy is on very little medication and has no major lingering issues because of his condition.
A college graduate who works as a project manager for a large construction firm in the Valley, Jeremy is also a scratch golfer and spends as much time as he can on the greens. He also spends time giving back to Phoenix Children's through various fundraisers.
"He was born with half a heart, and he wasn't expected to live past adolescence," said father Jeff Keck. "But the amazing medical team at Phoenix Children's Hospital wasn't going to pay attention to what was expected."
"When I was born, 25-years ago, children with my type of heart defect weren't expected to survive," said Jeremy. "I can tell you first-hand how special Phoenix Children's is. Miracles happen there – thank you from the bottom of my heart."
These photos were taken for a golf tournament fundraiser that Jeremy was part of.
Holiday Art ProjectThe Center for Cancer and Blood Disorder's Holiday Art Project was started in 1986 by a group of volunteers who wanted an annual fundraiser to support the Center's needs. The group began the project by transforming beautiful artwork created by patients of the Center into cards that could be sold in the retail industry. Five years later in 1991, the committee developed a corporate program as an additional fundraising opportunity. The corporate program was created to allow companies the opportunity to support the Center and obtain exclusive rights to their selected piece of artwork. Over the years the Project has grown in many ways.
One thing, however has remained the same...
The Art Project continues to be a volunteer-based program utilizing the expertise and passion of our community members, former patients, and hospital supporters in conjunction with Center for Cancer and Blood Disorders and Foundation staff liaisons in a variety of different capacities.
The first two photos show one of the first holiday cards created by a patient. The third photo shows an Art Project patient being interviewed by a local telelvision station.
Learn more about the Center for Cancer and Blood disorders.
Learn more about the Holiday Art Project.
ECMO is introducedExtracorporeal Membrane Oxygenation (ECMO) technology is introduced in Arizona by the Phoenix Children's Hospital Intensive Care Nursery, and then expanded to the Pediatric Intensive Care Unit.
ECMO is a special procedure that allows a child's heart and lungs to rest while equipment "breathes" and pumps blood for the patient.
Even today, Phoenix Children's is one of a few hospitals nationwide performing this life-saving procedure.
The first patient to ever benefit from ECMO - Nathan Harris - is in the first photo.
The second photo is another early image of using ECMO on a child.
Genius Club establishedWhen children come to the hospital, they need more than just great medical care. They also need to keep up with their schoolwork. That premise lead to the Phoenix Children's "Genius Club," founded in 1987, which became the Hospital's first in-house classroom. At the time of the opening, the "Genius Club" represented one of the first hospital schools in the nation.
The school grew over the years and reopened in 1999 as "1 Darn Cool School." Through the evolution, one very important aspect remained the same: The school allows kids to maintain a sense of normalcy in a situation that is anything but normal for a child. It also provides a distraction, giving kids something to think about other than why they're in the Hospital.
Shown here in the photos, Billy Truman was one of the first patients to use the Hospital's Genius Club. Born with gastroschisis, Billy spent the first full year of his life at the Hospital. Now at age 21, Billy remembers the school and his first teacher, Charlie Schneider. "I remember that he was very kind and loved to get kids to learn."
Heroes LuncheonIn 1990, the Foundation sponsored its annual Heroes Luncheon, a star-spangled event where Arizona Congressional Medal of Honor recipients honored patients at Phoenix Children's who were bravely battling an illness or injury. That year the event raised $60,000. The keynote speaker was Bob Keeshan, better known as Captain Kangaroo.
The Emily Center opensFounded in 1990, the Emily Center is named after Emily Anderson. Emily fought a rare form of leukemia for four years, before losing her battle a few days before her seventh birthday.
Frustrated by the lack of easy to understand information about Emily's illness, her parents founded The Emily Center so that families of sick children would always have access to pediatric health information that is accurate, easy to understand, and free of charge.
The innovative resource center for information on childhood illnesses contains more than 1,000 books and videotapes and a skills training lab. It was the prototype for such centers across the country.
Learn more about The Emily Center.
A visit from a championMuhammad Ali visits 16-year-old Delante Gentry, one of more than 400 patients in Phoenix Children's diabetes program.
NICU milestoneMore than 1,000 babies were admitted to the Newborn Intensive Care Unit in 1991, with a survival rate of 93 percent.
This photo demonstrates the philosophy at the Hospital in caring for the these babies - high-touch hands-on care is as important as the high-tech medicine that gives them a chance at a healthy life.
Learn more about our NICU today.
Circus Under the StarsCircus Under the Stars, a fund-raising event hosted by Sen. John McCain and his wife, Cindy, to benefit Phoenix Children's Hospital was a big success. The lawn party held Feb. 9, 1991, featured a "big top," orchestra, mimes, and plenty of clowning around.
About 650 PCH supporters, including 150 doctors, their spouses, and guests, attended the event and it raised several thousand dollars.
Nurses study NICU careNurses in Phoenix Children's Hospital's Newborn Intensive Care Unit received a grant in 1992 for a developmental study to analyze different methods of nursing care provided to low-birth weight infants.
The two-year study was the first of its kind.
The findings of this study laid the ground toward today's "womb rooms."
Saving Brian's armBrian Bogert and his mom Carrie were preparing to go home from a Wal-Mart shopping trip. Brian was standing beside the family station wagon, waiting for his mother to unlock the door, when a pickup truck sped backward lost control and slammed into the car. It rolled over Brian and tore his left arm from his body.
Carrie saw her son covered in blood, a woman who happened to be a nurse rushed over to help the family while another shopper called 911. Another woman picked up Brian's arm; lying several feet away, handed it to Carrie and said "this needs ice." Someone else ran into the store with a cooler, and the arm was packed into a bed of ice cubes within minutes.
In addition to his arm, Brian had a ruptured spleen. He was flown to Phoenix Children's Hospital for the complex surgery to reattach his arm.
The 10-hour operation included re-attaching the bone, taking veins from Brian's leg to graft the artery and the veins in the arm and using tissue form his back to wrap around the veins and bones. The nerves in Brian's arm were set aside to be reconnected during one of about 20 later surgeries.
Brian spent two weeks at Children's, had about 20 total surgeries, and extensive physical therapy to regain use of his left arm. He enjoys basketball, bike riding, rollerblading, and racquetball.
These photos show Brian with his family when he was a young patient, and a photo of him today.
Home of MiraclesThe first Home of Miracles becomes the largest single fund-raising venture in Arizona's history, raising more than $1.4 million.
The event raffles off a beautifully furnished "Home of Miracles."
Tickets were sold for $100 and the drawing was held at the Feb. 6 Suns/Bulls game.
This first photo shows Duane Wooten, MD, and patients posing with Willard Scott during the Jan. 5th broadcast of the Today Show. This national coverage sparked hitting the million dollar mark.
The second photo shows Channel 12's Bill Austin and Scott as they reported on the weather live from the hospital lobby on Jan. 4.
East Valley Clinic opensThe Phoenix Children's Hospital East Valley Specialty Care Center opened in December 1994 on the campus of Desert Samaritan Hospital in Mesa. The new satellite center provided outpatient services in neurology, pulmonology, gastroenterology, and behavior and development.
The clinic was planned with the children in mind, with playrooms and exams rooms close by so parents and patients feel safe.
The first photo shows a team of doctors on staff at the clinic. The second photo shows a medical assistant weighing in six-year-old, Sean O'Brian.
Life changing experienceTonight I was reading a friends blog who had recently finished her 1st chemotherapy and had hit the "16 day after" mark which is when her doctor had told her that she would start to see her hair thin and then all fall out. As I was reading her courageous and very funny story, it brought back memories of when our David, @ 6 months old, started losing his hair from chemotherapy treatments. I remember sitting on the couch with David and calling Mike from the other room as I was raking my fingers through Dave's little head and having his sweet baby hair come out in finger fulls. It broke my heart. Even though he was a little baby -his hair was still so precious to us, however a small consequence for his recovery.
David was first introduced to PCH on November 20, 1994 when he was airlifted from another hospital in the valley. He had emergency brain surgery (by the expertise of Dr. Manwaring) where his whole left frontal lobe was removed because of a tumor which had ruptured. He immediately started vigorous chemotherapy and would continue to do so for 1 year - 5 days in hospital, 2 weeks out. Following this he was able to complete his last year of treatment through outpatient. (YEAH!)
I found some old pictures of him as I was reminiscing about those 2 years - from his first days home after being born; to about 2 weeks after his first surgery at Phoenix Children's Hospital where we were spent 2 weeks living in a small shared hospital recovering and receiving the first of many chemo treatments; to bringing him home just in time for his first Christmas; to his 2nd surgery when he was sent home w/ a swollen head full of staples, to surviving to his first birthday (quite a milestone for us); to taking care of a central line infection at home - we would fill a small box with small trinkets so that he would sit still during the hour to two hour long treatments with which Mike and I had to do ourselves (very nerve wracking having a toddler hooked up to something that went strait into a central line going into his chest hoping nothing were jerk hard on it and rip it out); to dressing him up as "Frankendavid" for his first Halloween - we figured he had the head, scar, and temperment to go with the costume; to celebrating his last in hospital chemotherapy treatment - for the first year we had to stay in the hospital for 5 days while he received a very strong dose of chemo and had almost daily tests ran; to finally after 2 years being done and having his central line removed; to growing his hair back; to being the fun, yappy, musical, teenage boy that he is today.
We are in debt to PCH and their very highly qualified staff: Dr. Manwaring, Dr. Etzl, Anne, Dr. Kaplan, Bernadette, and last but not least all the nurses who carried us through the days and weeks we sat in that hospital room dying to be done with everything. We have moved out of state but deeply miss this amazing staff - we have yet to find a more loving, understanding, and patient set of medical staff. We love you guys ---- you are AMAZING! You guided us through our darkest days. David may never remember his years he spent in the hospital while on chemo - however we will never forget it, nor your kindness and support.
Child Advisory BoardPhoenix Children's Hospital was the first pediatric center in the country to establish a Children's Advisory Board, and they made the most of the opportunity.
Since its creation in 1995, CAB has been instrumental in bringing the child's-eye view to the hospital's procedures and facilities, contributing a multitude of suggestions that have consistently deepened Phoenix Children's understanding of what it means to be a hospital geared towards children.
Prior to the establishment of the Children's Advisory Council, PCH had a long-standing and very active Parent Advisory Council. Often times, parents would be the voices for the children, but it was soon realized that children could be their "own" voices. So the first Child Advisory Council, made up of children who were patients or siblings of patients at PCH, was formed and put into action.
Since the implementation of this council at PCH, Child Life Director, Theresa Boeger has consulted with many children's hospitals throughout the country and Canada on how to develop their own program.
Treating HIV/AIDS in kidsThe Bill Holt Infectious Disease Clinic opens, becoming the first pediatric clinic in Arizona for children with HIV/AIDS.
The clinic is named after lifelong friend of the PCH Foundation member, Phil Darrow, and his wife Robin, who initiated funding for the clinic.
Bill Holt devoted a tremendous amount of volunteer effort to the care of AIDS/HIV patients while battling the disease himself. The establishment of the program was a fitting tribute to his work.
In 1995, the clinic's case manager and two physicians were overseeing the care of 18 patients.
The first photo shows the first AIDS patient treated at the clinic. The second photo shows the founding staff members of the clinic.
Learn more about the Bill Holt Clinic.
1st bilingual gradsFifteen PCH employees, who were referred to as "living bridges between two cultures," received Spanish Bilingual Assistant certificates in a graduation ceremony on Feb. 15, 1995.
The program trains non-professional Spanish speaking staff to serve as interpreters.
The course also offers an important link to families in not only language, but in culture. Students learn about different levels of acculturation that effect the Southwest and other Latin American cultures, along with different dialects.
The first graduating class is only part of an ongoing effort by the Translation Task Force to enhance services for non-English speaking patients and families and also to assess future staff education needs.
Pet therapy programOn Valentines Day in 1996, PCH officially started its pet therapy program as a joint venture between the Child Life Department and Volunteer Services.
Scientific research has shown that a patient's interaction with an animal can provide positive physical and emotional benefits. It can reduce stress levels and invoke a sense of well-being.
Animal-assisted therapy acts as a catalyst to motivate patients to help themselves. A child will happily take a dog for a walk, or throw the animal a ball, forgetting the pain for a little while and moving closer to going home.
Today, our volunteer therapy animals and owners are trained and nationally certified. Group events and individual bedside visits are requested by the patient's doctors, nurses, occupational and physical therapists, or child life specialists. The program coordinator creates a session with the patient and the team that works toward the patient's treatment goals.
The first photo shows one of the first pet therapy visits with a patient.
The second photo shows a patient with one of Beethoven's babies - star of Universal Studios Beethoven II - Sterling, an 18-month-old St. Bernard with a patient.
The first volunteer team are shown in the third photo: David Elizondo with his therapy dog, Yoda.
State's first quintupletsOn September 9, 1996, the first set of quintuplets in Arizona are welcomed into the world. The Collins family - Bill, Bridget, and 3-year-old Liam - are from Chicago. They came to Phoenix because of the combined reputation of Good Samaritan and Phoenix Children's in caring for mothers and infants in multiple birth situations.
The arrival of the Collins babies set off a media blitz never before experienced at the hospital. Besides local media, The Today Show, Good Morning America, CBS This Morning, and Inside Edition descended upon Phoenix Children's campus.
The first photo shows the babies resting in the nursery.
The second photo shows Terri Flood, RN, caring for one of the infants.
Overcoming ChallengesMy daughter was brought to Phoenix Children's Hospital 12 hours after her birth in October 1996 at Paradise Valley Hospital. She was brought to the Neonatal unit after the nurse at PV discovered a lesion on her lower back. Naturally, myself and my husband were devastated with the news.
Subsequently, we received a call from Dr. S. David Moss who is the Pediatric Neurosurgeon at PCH. He said the normal course of action in her case whereby she was diagnosed with Spina Bifida was to operate immediately and remove the lesion. However, he felt that since she was full term he wanted her to get even stronger and thus postponed the surgery until she was two months old. At the time of her surgery, we were told she would be in the hospital for six days. Yet on the fourth day we were told she was doing very well and they would release her. This was the start of her journey. On a side note, my husband and I were sharing evenings staying with her and when I arrived on the fourth day (without a car seat) I had to go home and get it. This was quite unexpected but gratifiying.
Through the years, she has had several surgeries on her left foot which has the most nerve deficits. Most of them seemed to be stopgap measures until her latest one which was performed by Dr. Lee Segal in March of 2008. This surgery was the best one yet and has enabled her (with an ankle brace) to walk as normal as possible. We are forever grateful to Dr. Segal.
Search for a Miracle"Search for a Miracle", a bone marrow testing campaign sponsored by PCH, KTAR, and United Blood Services culminated in the largest bone marrow drive in Arizona's history.
PCH saved my lifeMy name is Erin and I was diagnosed with a cavernousangoma brain tumor when I was 4 years old in 1998. One week after I was diagnosed by Dr. Allen Kaplan, I had surgery to remove the tumor. After surgery I was completly paralzed on the right side. It was a long road to recovery.
Over ten years have past since I had surgery & I am doing great. I have regular botox injections to help my spasticity, done by Dr. S. David Moss.
PCH saved my life and the doctors gave me another chance to lead a normal life again. I would not be able to be who I am today if it was not for the doctors at PCH.
I would like to thank Dr. David Moss & Dr. Allen Kaplan for helping me lead a normal life again.
Relocating and growingFacing steady growth and an opportunity to establish its own campus, Phoenix Children's purchased a 22-acre site originally occupied by the Phoenix Regional Medical Center in 1999 to build a free-standing children's hospital.
Construction and renovation of the old Phoenix Regional site began in 2000, and Phoenix Children's began operations as a freestanding, specialized pediatric hospital in May 2002.
This photo shows the architectural rendering of what the new campus would look like.
1 Darn Cool School1 Darn Cool School is a certified K-12 program that helps patients keep up with their class work – something that is critical for kids. Many of them can spend months – or even years – at the Hospital.
The School opened in 1999, with expanded services and staff. It was originally called the Genius Club, which started in 1987.
The program has been especially important to middle and high school students who can continue earning credits towards graduation - a long term goal that no patient should have to give up.
Phoenix Children's is still one of the few hospitals in the nation to employ its own teaching staff, with four full-time accredited teachers, all Master's level prepared in Special Education, a classroom assistant, and a team of volunteers with backgrounds in education.
Teachers work with children year-round and also offer special programs, including a "Summer Camp" and theme-based enrichment programs for patients and their siblings. Each spring they have a prom, and each fall a back-to-school dance. For children who can't make it to the classroom, the teachers provide bedside instruction.
The school's staff also works with the patient's regular school to determine the individual educational needs of each child. And once a child leaves the Hospital, a re-entry program assists the children in transitioning back to their regular schools.
Tyler's storyTwo days after Tyler was born, he was diagnosed with Hemophilia B. His body produces virtually no Factor 9 to help his blood clot. But to really complicate matters, he's also allergic to the clotting factor. Over the years Tyler has endured infusions, bleeds, infections, catheters, and a lot pain. But the worst part of his disease is when he can't do something the other kids are doing.
Tyler's not your typical Hemophilia case. And he's never been your typical kid. Not because of the Hemophilia, but in spite of it. I think you'll gather from Tyler's interview that he has a lot of spunk and a great attitude. He's one of a kind and I'm so proud of him! - Deena (Tyler's mom)
Tyler's Interview
What is your favorite thing to do at Phoenix Children's Hospital?
In the hospital I like to go to the playroom.
What do you do in the playroom?
They've got tons of stuff. I play air hockey, pool, games, do arts and crafts. I play with the teachers.
What are some of the things you do in your room?
Sometimes they bring dogs in. I get to pet the dogs and one time we went in the hallway and I got to throw a ball and have him fetch it. Some dogs are big and some are little. I like the big dogs.
What is your favorite food to eat in cafeteria?
There's tons of stuff I like to eat there: pizza, quesadillas, mac and cheese, chicken, and for dessert they've got ice cream and angel cake. I like eating in my room. For breakfast they've got Cocoa Puffs and the tiger cereal.
What is it like staying at the Hospital?
It's fun like a hotel because they've got tons of places and stuff. Did I tell you I play tic tac toe there too? And one time I made a volcano and it had the pencil on the top. And you get to play on the computer there. Sometimes I'm hooked up to a pole and I go to the library and watch a movie.
How many surgeries do you think you've had?
I don't know because I'm always asleep. I think four or three, or maybe five or six.
I know that you've been in the hospital sometimes for a really long What is that like?
It's fun because I go to the playroom. I play there all day then go back to have dinner. Well, I have lunch too. I don't' mind being in the Hospital that long.
What would the Hospital be like without all of these fun things to do?
Is there anything else you want to tell me about Phoenix Children's Hospital?
No. I told you everything.
Wilms Tumor Survivor X2Hi my names is Amanda, I was diagnosed with stage IV Wilms Tumor when I was five. They found my tumor after I was complaining of a stomach ache. My mom took me to see my doctor and from there we were sent to the ER. Of course, no answer that night! We were told to come back the next day to get an ultra sound. They weren't sure if it was my spleen or kidney. My mom and dad took me back to the hospital the next day. And from what I remember, a doctor came to the ultrasound room and told my parents I had cancer, and I remember my mom running out of the room in tears and my dad starring at me in disbelief.
We walked across to Children's Hospital of Orange County and I was admitted that day. The next day I had several tests; CT, MRI, Labs. When they got done with all the test they diagnosed me with stage IV Wilms Tumor. Primary tumor was on my left kidney, the size of a small cantaloupe and I had several small tumors on both lungs. I had my left kidney removed, two right wedge resections on my right lung and 18 months of chemotherapy and 7 days of radiation.
I was a fighter and was in remission for 4 years until I relapsed. I relapsed in 1999 with one small tumor in my right lung. I had a bone marrow transplant in January 2000.
Thanks to Dr. Singer and her staff they were able to find the small tumor befor it had a chance to spread. The staff made my hospital stays not as bad as they could have been. I went through a round of chemo in and out patient at PCH (when they were located in Good Sam) and will always remember looking through the round windows waitting to play BINGO, or decorating my blood preasure cuffs so they weren't so ugly.
I am a 10 year cancer survivor thanks to PCH and Dr. Singer
Dinosaur "digs in"Robosaurus, a 40-foot-tall electrohydromechanical dinosaur helped with the Hospital's 2000 "Ground Shaking" event.
The metal-eating, fire-blowing robot demolished an old sign, kicking off the official start of construction of the state's first free-standing children's hospital.
Asthma clinic on wheelsSince 2000, the Phoenix Children's Hospital Breathmobile, a self-contained mobile asthma clinic, has traveled to inner-city schools providing asthma identification, teaching, treatment, and follow up. And it's making an impact on the quality of life for these children.
Once diagnosed, children receive an asthma action plan that includes education for asthma self-management, follow-up appointments, and evaluations, as well as a 24-hour phone number in case questions arise.
Since the inception of the Breathmobile, there has been a greater than 40 percent drop in missed school days due to asthma related problems, a greater than 70 percent drop in emergency room visits due to asthma, and a greater than 73 percent drop in asthma related hospital stays among Breathmobile patients.
Learn more about the Breathmobile.
Doctor on wheelsIn the fall of 2000 an innovative partnership was formed between Phoenix Children's Hospital, Children's Health Fund, and HomeBase Youth Services.
The result was the birth of the Crews'n Healthmobile, a 35-foot Mobile Medical Unit (MMU) that brings comprehensive medical help directly to this special population.
And in October 2007, the Crews'n Healthmobile II hit the streets, outfitted with the latest technology.
Led by Randy Christensen, MD, the mobile unit is staffed with medical practitioners from Phoenix Children's and case managers from HomeBase.
Watch a news segment about the Crews'n Healthmobile.
Learn more from Phoenix Children's Hospital's website.
Demolition beginsEven when talk of a children's hospital first began, the need for a freestanding facility was always understood. By 1999, the move was inevitable. The Hospital had outgrown its space on the Good Samaritan campus and there were not enough beds for children requiring care.
The Valley was in the midst of a population explosion. Nearly 2,000 kids in both 1999 and 2000 were waitlisted for care. By 2001 that number had grown to nearly 4,000. In addition, services for pediatric care had become fragmented, inconvenient, and confusing for families.
The board considered purchasing real estate and building from the ground up - an option that would have taken at least three years longer at a significantly higher cost. In 1999, Phoenix Children's chose to purchase the 22-acre site that was originally occupied by the Phoenix Regional Medical Center.
On Sept. 28, 2000, demolition began for the new Hospital, shown in this photo.
Children's Heart CenterThe Children's Heart Center opened in 2001 to serve the special needs of children with heart problems.
Phoenix Children's was already caring for the majority of pediatric cardiac patients in Arizona in 2000. The move to a Center of Excellence officially brought together a comprehensive team that was ready for the toughest cases and sickest kids - dedicated to caring for the whole child.
This photo shows the opening ceremony of the Children's Heart Center. Teddy Bears were given to children in the community.
Learn more about the Children's Heart Center.
Helping Hand for Survival
When my daughter was 5 weeks old, I took her to another hospital because she had been wheezing and lethargic for over 24 hours. The hospital was not equipped for such a small infant, and we needed to wait for an ambulance to get us and transport her to PCH. While waiting, they needed to suction out her lungs with adult tubes, while telling me that my child was suffering from pnuemonia. Every time they did this, I had to leave the room becasue the pain she felt while the tube was put up her nose and into her lungs was delivered to me by the sounds of her tiny screams.
I sat up with her for 23 hours, in a room, waiting for the ambulance, and holding an oxygen tube to her mouth.
When we arrived at PCH, they took immediate action in helping my daughter, while comforting me. I was told that she was very ill, and had we waited another 24 hours for her to be seen, she would not have made it.
At this point, my daughter was exhausted, and couldn't even cry. She seemed to want to give up.
On the first night, she had a nurse that came in to administer medication, and give her a new IV, which included a splint for my daughters arm so that she wouldn't move it. The nurse had to be about 4 years older than me, and at the time I was only 20, but her knowledge about how to care for a tiny child was amazing. She told me that just a loving touch, and talking to my child, who was still lethargic, has the powers to make miracles happen.
We were there for 8 days (the majority of the time I was alone with my daughter), and every day the nurse came to visit. On her days off, and even when she had just been relieved from her night shift, she came in to hold my daughter, talk to her, and give her gentle warm baths. When she was done, she would lovingly return her to my arms. She would be with her anywhere from a half an hour, to an hour, holding her and letting my daughter know that she was loved.
Today my child is almost 12 years old, and as amazing as ever. I call her my miracle baby and everytime I tell the story of her survival, I let everyone know that I beleive this nurse saved us both. She helped my child live, while teaching a young mother how truly powerful love is.
ER for kids opensPhoenix Children's Hospital opens the Pediatric Emergency Department is the first emergency department exclusively for kids in Arizona.
This photos show the staff on opening day.
Providing state of the art emergency care 24/7, every one of our full-time physicians are Pediatric Emergency Medicine trained specialists and come from leading U.S. and Canadian children's hospitals. Nursing staff have unequaled pediatric emergency experience and expertise.
And today, with more than 56,000 visits annually, the Emergency Department uses every bit of that expertise in caring for Arizona's children.
Learn more about the Emergency Department.
See the new hospitalA community preview celebration of the new Phoenix Children's Hospital - Arizona's only comprehensive children's hospital draws thousands of supporters.
On Sunday, April 14, 2002, a variety of activities were offered. There were tours of the hospital, free teddy bears for children, face painting, finger casting, Radio Disney, art projects, and over four hours of entertainers.
This photo shows Becca Atherton, Hospital patient and Child Advisory Board member, turning the key to unlock the "Hospital We All Built" during the dedication ceremony.
Kids moving dayThe kids being cared for at the old facility on McDowell Road are moved to the new campus on May 24, 2002.
The hospital cared for a small, selected group of patients during the week of May 17 to earn its JCAHO accreditation, and started accepting physician referrals on May 25.
These photos show two patients being transported to their new medical home on Thomas Road.
The Day Nick Heard!Nick was diagnosed with Kernicterus at roughly 1 week old. Because of the Kernicterus, he has Cerebral Palsy, he is deaf, he has epilepsy and he is visually impaired.
When we started seeing an audiologist at PCH, we were given hearing aides which we came to realize, were not working. We talked about the Cochlear Implant with his audiologist at Phoenix Childrens, but because Nick had so many other issues, and the implant team had never implanted a child with "other" special needs, we were unsure it would work for Nick.
My husband and I (and the PCH audiology team) figured Nick had nothing to loose. In January of 2003, Nicholas received his Cochlear Implant. In March of 2003, the implant was officially turned on.
On that day, Nicholas turned to my voice for the first time. We were told by his audiologist, because of Nicholas , they were now implanting more special needs children.
Natalee's storyNatalee is as unique as the spelling of her name. She listens to music from the 40s and has already won a handful of writing contests.
Natalee loves the freedom her imagination provides. When she isn't crafting a story, she'll be your typical kid, seeing movies with friends, shopping, and traveling with her family.
But life as Natalee knew it changed overnight. Following an unremarkable fall in P.E., Natalee's eyes started darting back and forth rapidly. A frantic trip to a local emergency room. And the terrible news – Natalee had a brain tumor. The emergency physician sent her to Phoenix Children's.
On December 22, 2003, a CT scan at Phoenix Children's Hospital revealed multiple advanced brain tumors. And they were malignant. Unbelievably, their active, outgoing girl had brain cancer.
Two days later, on Christmas Eve, neurosurgeon Dr. David Moss, brought in hand-selected surgical assistants and a second neurosurgeon to perform an emergency surgery.
As she was wheeled down the hall, her mom was on one side and her dad was on the other. To stay strong, they chanted together, "We're from New York and we're gonna kick butt."
Dr. Moss was able to remove the largest of the tumors, located in the back of Natalee's brain. It was along her cerebellum, which controls balance and fine motor skills. The tumor was so big, parts of it broke off, and crystallized deposits attached to her spine.
When Natalee was transferred to the oncology floor, the toughest work began. The second tumor was entwined around her optical nerves and inoperable Plus, there were still crystallized tumor deposits along her spine.
See the rest of Natalee's story at www.pchhandprints.org.
Robert Meyer, CEOPhoenix Children's appoints Robert Meyer as President and CEO. Phoenix Children's celebrates 20 years of hope, healing and the best care for Children.
Robert Meyer was appointed President and CEO of Phoenix Children's Hospital in October 2003, having previously served as Interim CEO since May 2003. As the chief executive of Arizona's only freestanding pediatric hospital, Meyer is responsible for planning, directing and managing the current operations, future growth and program development for Phoenix Children's Hospital.
Prior to joining Phoenix Children's Hospital, Meyer was Vice President and National Director for Health Strategy Practice for Cap Gemini Ernst & Young, based in Irvine, Calif., the consulting firm hired by Phoenix Children's to assist the hospital regain financial viability. Meyer is credited for the rapid and significant turnaround of the hospital's finances and operations, and has been heralded for his strong operational and financial management skills, ability to unify diverse constituencies, and his strategic vision to realize the vision and mission of the hospital and advance pediatric health care in Arizona. Meyer joined Ernst & Young in 1985 and has extensive experience in health care administration.
Meyer is actively involved in the community both as an ambassador for Phoenix Children's Hospital and in a variety of roles outside his hospital duties. He serves on the Governor's Committee on Arizona Medical Education, the Ronald McDonald Capital Campaign Cabinet, the Arizona Biomedical Collaboration Board, the Arizona Hospital and Healthcare Council on Government Relations, the NACHRI Council of Child Advocacy, and is the treasurer on the board of the Arizona Medical Education Consortium. Additionally, Meyer has been a guest teacher at the University of California at Los Angeles Anderson School of Business and the Arizona State University Carey School of Business. He also has been a United Way Tocqueville Society member for the past 10 years.
He received his Bachelor of Business Administration from the University of Michigan, and became a Certified Public Accountant in 1981.
Braeden's Playground
Very few hospitals – even children's hospitals – have their own playground. Braeden's Playground, complete with a play structure, putting green, and Phoenix Suns basketball court, was named after Braeden, a patient who was born premature and passed away after nine days. His parents, professional golfer Brandel Chamblee and his wife, Karen, wanted to create a playground where children (and their siblings) could run around and forget that they're in a Hospital. The Chamblee family and friends, other PGA golfers, and generous Valley organizations raised $400,000 in just three short years.
Beetle Bailey's MiracleOn August 28, 2004 Bailey Honyouti was 3 years old and was accidently hit with a golf ball behind his left ear. It caused him to have a subdural hematoma and was immediatly rushed into surgery. The activity in the ICU was overwhelming and we had no idea how bad the injury was. They told us he would have to go into immediate surgery.
Dr. Shafron told us the severity of the impact and I remember thinking "what!...this can't be happening..." I had no emotion in me except shock. The nurse asked if we would like to give him a kiss before they took him. I don't even remember how long we waited but when Dr. Shafron came out to speak with us, my heart stopped for a moment and he told us "the surgery went well. He's in recovery in the ICU".
Bailey spent weeks in ICU after that. Dr. Shafron and Dr. Kaplan monitored his recovery.
There was a time when Dr. Shafron told us there was nothing further they can do for Bailey because the swelling of his brain was pushing against his skull and I remember telling him that "if Bailey is meant to go, we'll let him go, but we will not put him through surgery again to remove a portion of his skull so the swelling can ease." He understood and all we could do was wait. Over time, the swelling went down, and slowly but surely Bailey started to recover. Dr. Kaplan met with us one day and told us that if Bailey should regain consciousness he may not have any memory, nor walk, or talk, basically be a baby all over again. And I remember thinking I was ok with that. As long as I had him.
Bailey did regain consciousness and he did not speak for a few weeks. The told us that he had right side body weakness. He started therapy with Meg, Heidi, A.J., Kelly, and Cindy. There was a whole team that helped with his rehab that I may have left out.
On one of his therapy days, I came back to he hospital to find that Bailey had started talking and clapping again. I said to him "I heard your talking again?" he replied to me in a slow voice, "yeeeeah" with a huge smile that made me tear up.
So throughout his therapies, he progressed day after day, he was talking, he remembered us - his family - although had no recollection of his injury, and eventually he started taking small steps using a cane- "big red" is what they called it :)
Eventually after 2 months and a few days in the hospital Bailey was allowed to come home.
To this day he still sees Dr. Kaplan for check ups, and at times we seen Cindy Craver as well as his favorite nurse, Rita Gordon.
Bailey and our family will forever be grateful to the team at PCH. There are no words to express how lucky we were to have them as Bailey's angels.
Priscilla Frances SmedleyOn January 17, 2005 at Banner Good Samaritan Hospital in Phoenix, my daughter Priscilla Frances Smedley was born 17 weeks premature at 23.4 weeks gestation weighing 1 pound 6 ounces (600 g).
While in the Phoenix Children's Hospital's NICU at Good Sam, Priscilla was plagued with many micro - preemie maladies - Patent Ductus Arteriosus requiring surgery, MRSA, Necrotizing Enterocolitis which required surgery, Several bouts of pneumonia, urinary tract infections, ROP which required surgery and two days before her release, Group B Strep.
Priscilla came home one day before her due date on May 12, 2005 weighing 6 pounds, with only nasal oxygen and an ampnea monitor! Within her first seven months home, Priscilla developed Respiratory Syncytial Virus and was hospitalized for 10 days.
Now at 5 years old, 45 inches and 36 pounds, Priscilla is being tested for her school district's gifted magnet school. Both her mental and physical development surpass that of her peer group. Currently, she is studying piano, gymnastics, horseback riding and ice skating.
I truly believe that Priscilla's success is due to the care she received during her delivery, while in the NICU and the follow-up care she received. Thank you so much for giving my Husband and I our Miracle Baby - Prisiclla Frances.
Treating kid's kidneysThe first Pediatric Hemodialysis Center in Arizona was dedicated on April 26, 2005 at Phoenix Children's Hospital with a special thank you to the Bombeck family who gifted the entire cost of the project.
The Center is a totally child-friendly space with bright colors, and a cheerful, airy environment. The unit is equipped with games and toys to make the long hours of dialysis more endurable for children.
The decision to make the donation was easy for the Bombecks. Bill Bombeck's first wife, Erma, the famous author and humorist, died in 1996 of complications following a kidney transplant. Carol, his second wife lost two sons to kidney disease.
Today, Phoenix Children's comprehensive nephrology program includes Arizona's only dedicated Pediatric Dialysis Center, providing inpatient and outpatient hemodialysis and peritoneal dialysis, and the state's only dedicated Pediatric Kidney Transplant Program.
This photo shows the opening ceremony of the Center. Pictured from left to right – Dr. Adelman, Dr. Morgenstern, CEO Bob Meyer, Carol Bombeck, Dr. Cohen, Bill Bombeck, and Dr. Joseph.
The day I met AbbyI met Abby when we were taking photos of patients. Little did I know she had just been admitted to the hospital the day before. And little did I know that the gentleman I had met in the cafeteria line the day before turned out to be her Dad. She was undergoing treatment for a rare form of cancer, and over the next nine months, I would follow her story. And I even ran a half marathon in her honor. Abby's doing great now, and she's such an inspirational kid. The photo is from the day I ran the race for her.
Against all oddsDuring a family reunion in upper Utah, I came down with a sinus infection (I've averaged around 1 a month since I was born). After a while, it progressed to what we thought was the flu. We went to a pediatrician in Ogden, UT who told us it was the flu.
After two more misdiagnosis', I went home (Big Water, UT) June 29, 2006. It progressed.
I was severely underweight, my eyelids had gone a strange black, and I was repeating things that made absolutely no sense, and didn't realize it.
The morning of July 5, 2006, I woke up crying. I didn't understand how I got to Big Water, and why I wasn't in Ogden.
My mother took me to a local doctor. He was my doctor at birth, and has been since. Due to my incessant sinus infections, he's seen me frequently and thus- knows me well. While walking to the room in which to see him, he was on his way to another room and saw me. He took one look at me, shined a light in my eyes (which hurt so bad, I started bawling) and took me to the emergency room for CAT scans. While the CAT scans were being done, he was arranging a life-flight helicopter to Phoenix Children's Hospital.
We showed up with the scans. No-one was quite sure what was wrong yet, but my mom was told that the next morning they would gather some more doctors from other places in Phoenix to come and see.
Twenty or so doctors showed up an hour and a half later. They came up with three options of diagnosis. A brain tumor, brain cancer, or Viral Encephalitis. An intern, studying from New York; recognized and confirmed that it was Viral Encephalitis.
Encephalitis is swelling of the brain. Viral Encephalitis is swelling of the brain caused by a virus. Surgeon. Dr. Kim Manwaring of Phoenix Children's proceeded with a brain biopsy the very next day. On July 6th, Dr. Manwaring cut open the right side of my head and took ten pieces of tissue for testing. He successfully determined what virus infected my brain. It was the Herpes Simplex Virus.
It was determined that while my immune system was fighting the first sinus infection, the Herpes Simplex Virus got into my nervous system and attacked my brain. The Herpes Simplex Virus- HSV1, lives behind the ear. Most people are born with it - it is the same virus that causes cold sores.
The odds of this? One in every two million people. The virus was so far along, that doctors were surprised I was alive when we showed up. We were told that I had a 25% chance of survival and that if I did survive, I would most likely be in the hospital for 6 weeks, be in therapy until December, have severe mental retardation, and the left side of my body was going to be permanently paralyzed for the rest of my life, leaving me in a wheelchair. NONE of this happened. I was in the hospital for three weeks and two days. I was flown to Phoenix Children's on July 5th, and released July 28th.
Also in Phoenix, after I arrived, doctors ran numerous blood tests. Doing so answered the mystery as to why I've had such a problem with sinus infections. In my blood, I do not have Gama A- the white blood cell that protects your upper respiratory system, making it very easy for the virus to get into a nerve pathway and attack my brain.
I do have a few minor disabilities. I have lost my sense of smell completely, and the right side of my brain is around 30% scar tissue. Another 10% of the right side was damaged by the virus, and after the damaged tissue went away, fluid was left. That area is the Right Front Temporal lobe - the area of the brain that controls emotions and social abilities. I struggle with this above all.
While in Phoenix Children's, I didn't quite understand what was wrong. I had absolutely no recollection of the past two years, and thus didn't remember falling ill, or for that matter, any other recent events.
I was perseverating (stuck on one thing, which was the fact that I wanted to go home, and didn't understand why I couldn't).
I didn't realize what an absolutely wonderful, incredible, great place I was in at the time. But looking back on it, there are no words to describe my appreciation for all the wonderful people at that hospital, the ones I met, and even the ones I haven't.
Along with my injury, a dream has developed. I want to become a Child Life Specialist, and I only hope that when I do; I will be able to work with people as amazing as those in Phoenix.
Thank You Phoenix Children's Hospital. There is not a day in my life that I don't think of all those I met along the way, and how they not only saved my life, but changed who I am forever, and what I want to do with my life.
Allie's StoryI began working as a RN in the Pediatric Intensive Care Unit at Phoenix Children's Hospital in the spring of 2000. I absolutely loved my job, my coworkers, and espescially my patients and their families. I witnessed some of the most beautiful, miraculous, and heartbreaking moments of my life. All the time grateful that it was not my child. I felt so blessed to be a part of such a amazing team who always went above and beyond for our patients and for each other. I had know idea that one day I would trust my child in the hands of these very people.
In December of 2006 I gav birth to my second daughter, Allison. I had no prenatal complications, normal delivery, a fairly easy pregnancy. On Christmas day, Allison was a week old, and my brother-in-law looked down at her sleeping and said, "Boy, she is really chugging isn't she?" I looked down and forced myself to notice what I had been denying since she was born. Her breathing was abnormally rapid, retracting beneath her ribs with each inspiration. I tried to tell myself I was just beging paranoid (Nurses are notorious for assuming the worst and making a big deal out of simple symptoms) but I could not fool myself any longer when later that night my husband called to me to tell me Allie was sweating profusely while drinking her bottle. I fell asleep knowing that there had to be something wrong with her heart. All the symptoms are red flags for congential heart disease. I had seen it hundreds of time at work.
The next day we took her to the pediatrician. They agreed that her symptoms were concerning. They checked her oxygen saturations, 95%, too low for a newborn. They listened for a murmer for what seemed like a hour. She then told me that she was going to send us to the ER at PCH. My stomach tightened.
Once in the ER we were swept up by my coworkers to the trauma room and put Allie on a monitor, started an IV, and took her for a chest X-ray. It felt surreal holding her on the gurney under the bright lights, listening to her monitor alarm. The physcian called me out of the room, leaving Allie with her terrified daddy. She told me the X-ray was back and she thought I should see it. Leading me to the monitor, I saw it, the outline of a huge mishappen heart. I buckled like someone had kicked me in the stomach and began to cry. By then some of the PICU staff had come over to support me and helped me regain my composure so I could go tell my husband. He sat there holding our sleeping daughter with such tenderness and love. Looking up at me he asked if she was okay. I told him, "no, honey she's not."
After an echocardiogram with two of the intensivists from the PICU watching with troubling faces , we finally got a diagnosis. Allie had a complete atrioventricular canal heart defect. She had no middle wall of her heart leaving two chambers instead of four and only had one large mishappen valve instead of two. She was also in severe heart failure.
She was admitted into the PICU where we were immediately surrounded by my coworkers loving arms. They held me up with words of encouragement and hugs. They made sure we ate something, and made us get some sleep. It was after we were tucked in the room, trying to sleep that I looked up at Allie and felt a pain inside that was nothing like I had ever felt. Seeing her lying there surrounded by tubes and wires, I finally understood. I could the feel pain I had seen in so many parents eyes as I cared for their children. I felt their cold loneliness and complete and utter lack of control. This was my baby in that bed. That was when Allie's nurse came in to check on her. Without speaking a word she knelt in front of me and held me as I cried harder than I could imagine I could. She whispered, "We will get through this". Not you, but WE will get through this. With that, I finally let myself rest.
Allie spent the next 11 days in the PICU. She was started on medications to improve her heart function, given a feeding tube beacasue she spent so much energy just trying to eat. There was not a minute where someone was not watching, doting, and loving my baby girl. The nurses and doctors I so adored had become my rock, giving me hope and reassurance. I never would have made it, Allie would never have made it, without them.
We were able to bring Allie home on a bunch of medications and a feeding tube. She developed horrible reflux, violently throwing up and turning blue after each feeding. We jumped at every abnormal noise or movement. After a few months it was time to fix Allie's heart. I was terrified but also hopeful because I was blessed to have the most amazing pediatric heart surgeon operating on her, Dr. Michael Teodori. It's funny because as a nurse in the PICU I found Dr. Teodori extremely intimidating but now he was the gentle, confident physician that all the families loved.
During these few months my coworkers had collected money and gave us gift cards to help ease the stress with pre-made meals. They checked on us regularly, it was humbling to be so supported.
On April 5, 2007 Allie was admitted to PCH for the surgery that would repair her heart. I will always remember handing her over to the OR nurse. She smiled and said, "we will watch over her, I promise." I couldn't have trusted her to be in the hands of anyone else. If she had to go through this there is no where else in the world I would have wanted her to be but right there, at Phoenix Children's. I knew that the staff would handle her with love, respect, and compassion. They would talk to her, and hold her hand. They would be the angels we so desperately needed.
Allie would be in surgery for over 7 hours. She was on bypass for 132 minutes. My family and I were updated frequently and visited by so many of the people I worked with. So many people were praying for her, it was the most humbling experience I have ever had. At the end Dr. Teodori came out with a smile and told us that she had done much better than expected and was on minimal support. I am so grateful to have known him. He had done amazing things for so many of my patients and here he was saving my daughter. The man I had been so intimidated by as a nurse accepted my gratitude with a modest grin and a hug.
Allie made her second trip in her short life back to the PICU. Her nurse would be someone I had long admired for her knowledge, compassion, and genuine love of nursing. Allie looked so tiny among the tubes and wires. I was the only one in my family who could look at each machine and know what it was doing, how much medication she was getting and why, how the external pacemaker was keeping her heart beating, why the chest tube was draining what looked like so much blood. It was when I looked into the eyes of the staff that had gathered around the room that I was comforted, they did not want to lose her any more than I did. I knew they would give her the best care possible. I knew I could go home that night and rest while she was sedated and on the ventilator knowing she was in the hands of the most amazing nurses, the most extrodinary people I will ever know.
After a few short days Allie was able to have her breathing tube and pacemaker removed. Again her nurses watched over her every second but they also watched over my husband and I. They made sure we ate, slept, and knew everything that was going on with her at all times. It was during that time I found myself afraid to hold Allie. I didn't want to hurt her. This was ironic because as a nurse in the PICU I handled with ease children in even worse condition than her. It wasn't until her nurse, another wonderful person I had known since I started working there reminded me that Allie needed me, as a mom, to hold and comfort her. I overcame my fear and stepped up not as a nurse but as her mommy. She was discharged home after one week, surprising everyone with her rapid recovery. I can only credit her recovery to Allie's strong spirit and the care she recieved at PCH.
Allie came home with her feeding tube but was quickly weaned off most her medication. Her reflux all but disappeared and she sprang to life. Laughing, playing, crawling, then walking. She had months of speech and feeding therapy at PCH. This allowed me to see what happens after a child leaves the PICU. I found the same compassion and outstanding care in every outaptient setting we encountered.
When Allie was admitted to have gastrostomy tube placed in January 2008, I was never nervous knowing where she would be. The Pre and Post-Operative staff were kind, gentle and patient. The floor nurses made sure Allie was never in pain and that my husband and I were included in all aspects of her care. I can honestly say there was not a single person who I encountered at PCH that was not the most professional, honest, caring, and dedicated human being.
Since that time Allie has grown into a sweet, loving, curious little girl. She was able to have her feeding tube removed in September of 2009 because she was finally eating enough on her own. She is on no medication, her heart is working beautifully, and except for some scars she is not really different from any other 3 year old. Her strength and view of the world astounds me everyday.
I owe so much to Phoenix Children's. They hired me as new graduate and gave me the tools and experience to be a good nurse. They showed me by example to be truely compassionate, considerate, and hard working. They did not give up on me and allowed me to a part of something truely remarkable. I was privledged to work with some extraordinary nurses, doctors, residents, PCTs, and support staff. Most of all they saved my daughter. They cared for her when my love wasn't enough to fix her. The held me up at my weakest moments and held my hand through the most terrifing experience of my life. For these reasons I will be forever in debt to the people at Phoenix Children's Hospital. Thank you for everything you have given me and my family, I hope you know what incredible people you are!
Best doctors awardsThe Best Doctors list recognizes the top 3 to 5 percent of specialists in the country; more than 20 percent of Phoenix Children's medical staff physicians appear on the newly-released list.
The Best Doctors database is built on recommendations from physicians who nominate their peers for the recognition.
"We're growing to meet the needs of this community and an essential part of that growth involves recruiting some of the best and brightest physicians in the country to make sure we're providing this state with world-class pediatric care," said Bob Meyer, President and CEO of Phoenix Children's. "This honor shows we've done an outstanding job of building our team, and we are so proud of the outstanding physicians at this Hospital."
See the whole list of our doctors that were recognized.
Phoenix Children's gets closer to home for Valley families.Read More
First Satellite Locations Open
Phoenix Children's opened its first satellite locations to bring care closer to home for families who live further from the main campus. The first location in the East Valley on Higley Road and the second in the Northwest Valley on 51st Avenue.
These locations offer specialty services to local families such as cardiology, dermatology, endocrinology, gastroenterology, hematology/oncology, nephrology, neurology, neurosurgery, orthopaedics, sports medicine, psychiatry, psychology, pulmonology, diagnostic imaging/radiology/x-ray, fluoroscopy, ultrasound, ct scans, mri, laboratory services, audiology, speech therapy, occupational therapy, physical therapy (including sports medicine pt), feeding therapy, language services and social work.
State's first sextupletsJenny Masche delivered her sextuplets - Bailey, Savannah, Molli, Cole, Blake and Grant on June 11, 2007. The sextuplets were the first babies to be cared for in Phoenix Children's Hospital's renovated Newborn Intensive Care Unit (NICU).
Asked about her experience with the Phoenix Children's NICU, Jenny said, "I had the most wonderful experience. I'm a Physicians Assistant so I'm in the field of medicine, and know the difference between good and bad. Those doctors are the best. They genuinely cared about us and are very personable. Dr. Leonard [Jordan Leonard, MD, of Phoenix Children's] is such a nice doctor. They all prepared us for the course of action and what would happen. And the NICU nurses couldn't get any better. I was so sick for four to five weeks after the delivery that I didn't really have the ability to care for the babies on my own, so the nurses took care of them. They loved those babies so much and were so committed to them."
These photos show the babies when they were first born and then one-year later.
Keston gets a transplantAt two years of age, and after 15 months of dialysis treatments, my son Keston received his kidney transplant. PCH cared for Keston from birth and beyond his transplant.
Joanne Watson from the Dialysis Unit trained and prepared me to administer daily 12-hour dialysis treatments. Pediatric Nephrologists, Dr. Mark Joseph and Dr. Bruce Morgenstern, were dedicated and showed genuine concern for both Keston, my older children, and myself.
There is no way I can ever thank them, or the other vast members of PCH, for giving my son a chance to live a long, happy, and fulfilling life. You are all angels!
See Keston's film at PCHhandprints.org
Healthcare LeadershipThe inaugural Health Care Leadership Awards, presented by Arizona Business Magazine, honored four Phoenix Children's Hospital's doctors and its Graduate Advancement Program in Pediatrics (GAPP) at a ceremony on March 5, 2008.
David Beyda, MD, Phoenix Children's Hospital pediatric critical care physician, received the Humanitarian Volunteer Award for his long-term commitment to delivering personal medical care to children in third-world countries. Dr. Beyda, (center, first photo) who delivered the evening's keynote address, spoke from the heart about human understanding and social conscience.
We are simply silent servants, practicing with our hearts as well as our heads – helping those who are vulnerable and sick as they reach out their hands to us for help," said Beyda. "We need to grasp theirs, with compassion, kindness, and empathy. It's called 'humanism.' No more; no less."
Jessica Boklan, MD, was recipient of the Health Care Leadership Award for Research. Boklan (center, second photo) is the Director of Oncology Research at Phoenix Children's and makes it her mission to bring the latest treatments and therapies to pediatric cancer patients. In accepting the award, Boklan thanked the patients and families who participate in the clinical trials that bring about advances in the treatment and cure for childhood cancers. "They are the real heroes – they take part in these research trials not only to serve their own child, but the children who will come after them."
Additionally, Jeffrey Buchhalter, MD, PhD, was a finalist in the Physician category; Michael Teodori, MD, was a finalist in the Surgeon category; and the Hospital's Graduate Advancement Program in Pediatrics was the finalist in the Institutional/Educational Program category.
Haydan's storyHaydan was born on February 13, 2008, delivered at 24 weeks weighing 1 pound 7 ounces.
She was transferred to PCH when she was two months old when the hospital found a grade 4 bleed in the brain known as CSF water in the brain.
We were told we needed to transfer her to a hospital. We picked PCH because they have been in our family for many years.
Right away after being transferred, she went into surgery to place a shunt (tube in her brain) so the fluid could drain. Phoenix Children's Hospital saved my little girl because we were told that she had a 10% chance of living.
We thank all the doctors and nurses everyday that she is here with us. Now she is almost four years old and she is the most high spirit little girl I know - even with all the hospital visits and brain surgeries that she has had. We know that she will continue to have to have brain surgeries and we will only have one hospital do them and that's PCH.
Thank you PCH we love you.
New Hospital expansionThe expansion of Phoenix Children's will more than double the campus size from 19 to nearly 40 acres, and from 345 to 632 licensed beds by 2012.
Every square foot of Phoenix Children's will undergo renovation without ever shutting its doors, or compromising the level of care that the community has come to expect from the Hospital.
The vision for the new Hospital is to enhance clinical programs and increase overall capacity in our unique, kid-friendly environment of family-centered care.
Read the full story about Phoenix Children's Hospital's expansion.
Watch the expansion video that shows how the Hospital will grow.
The Trauma Center opensThe Level I Trauma Center at Phoenix Children's Hospital is Arizona's premier site for the evaluation, stabilization, treatment, and care of children who have experienced a traumatic injury.
A level I trauma center offers the highest level of emergency and surgical care to patients, 24 hours a day, 365 days of the year.
Phoenix Children's is equipped to handle the most severe cases in the shortest amount of time. Care is waiting for the patient, instead of the patient having to wait for care.
It is the only Level I Trauma Center exclusively for children in Arizona.
The first photo shows the opening ribbon-cutting ceremony of The Trauma Center. The second photo shows many of the trauma staff members.
Read more about the Trauma Center.
Surgery stopped seizuresAt 5 weeks old our baby started having seizures. After many tests it was determined that the seizures were stemming from a tumor in her brain caused by a genetic disease called Tuberous Sclerosis. She tried a couple different anti-seizure medications but she was still having break-through seizures (we were seeing around 3 a day). Our neurologist thought that surgery might be an option and sent us to see Dr. David Moss (we live in Tucson and there are no pediatric neurosurgeons here - our neurologist wanted to offer us the best care and so we felt it important to drive to Phoenix to see Dr. Moss).
Dr. Moss wanted Claire to have a 2-day EEG test to pinpoint exactly where the seizures were coming from. Neurologists Dr. Buckhalter and Dr. Jarhar were fantastic. They wanted to perform a test called an Inter-Ictal Spect which had never been done at Phoenix Children's before. It was something they had done many times at a previous location. The EEG and the Ictal Spect determined that every one of her seizures were coming from the exact same spot in the brain. We felt that surgery was the best thing.
Dr. Moss performed the surgery and when Claire was all done it was so good to see her. There was concern that she would have paralysis on the right side of her body, but she ended up not having any problems. At the time that I am writing this, it has been 4 1/2 weeks since her surgery and she has been seizure free.
The staff at Phoenix Children's were awesome. The nurses were fantastic and I felt that every doctor was very upfront with us and honest. They let us know things to expect (such as nausea, swelling, etc.) and answered all of our questions. Although it was hard to be away from home and my other children, this was the best place for us to be for Claire's care.
AZ Ghostbusters VisitOn September 8th, 2008, the Arizona Ghostbusters were able to make their first visit to Phoenix Children's Hospital. Our Ghostbusters costumes allow us to draw extra attention to many well deserving charities. The smiles and joy that our costumes generate help us give to the community and put great meaning into our group. A children's hospital visit has always been our goal since we formed a few years ago.
We visited several floors; on each floor we started in the playroom and then went to each room to visit the children who were not able to leave bed. The staff was able to take pictures so the kids will still have a keepsake from the visit. We wanted to do more than leave the children with just pictures, so we also had stickers made, as well as Ghostbusters coloring pages and puzzles, and crayons.
There was a great response from the children, the parents, and the staff. Some kids were very shy and others were very ecstatic. There were some very emotional moments because you certainly never want to see children in the hospital, but the parents and kids are some of the strongest people I have ever met and after meeting the staff, nurses, and doctors, I know these children are in good hands.
This was by far the greatest event we've done. Knowing that we made these kids forget about their troubles and lighten their day, if even for just a minute, made it mean the world to us. We hope to visit again soon.
when i had my seizureOn October 22, 2008 i had a seizure at 6:43 am. I was taking a shower to get ready for school. Then like 10 minutes later, I couldn't breath and i started fainting. I was really weak when i got up from my seizure. After that my mom called the ambulance.
When they got to my house i started crying because i was really scared. When I went to the Maryvale Hospital I found out I had a sinus on the back of my nose. The doctors there couldn't do anything because i was to young, so they sent me to Phoenix Children's Hospital where you guys are. I hope you guys don't get more sick and I am going to volunteer and I will see you some day.
Sincerely, Mayra
PCH Docs Saved My Babies!On two separate occasions, I have had the honor of seeking care at PCH for two of my children.
The first child, Elijah, began to show signs of trouble in utero when at 29 weeks gestation, a massive cyst growing from his liver was found when I went into pre-term labor. The nature of the cyst was apparently unlike any seen before, and when the problem was first discovered, my baby's life was in serious jeopardy. Along with the Phoenix Perinatal Pediatrix-Obstetrix doctors, the NICU doctors at PCH helped to resolve my son's issues.
First, his cyst was partially drained while I was still pregnant. Thankfully, my son made it to 36 weeks before being born, giving a chance for his previously poorly developed heart and lungs to mature better. Dr. Towbin at PCH inserted a drain inside my son when he was just 8 weeks old to try and drain the cyst and get the walls of it to collapse on themselves. This simple procedure worked and I credit all the staff working well together with saving my son's life.
This year, our baby girl Gianna was born after a rough pregnancy (the latter 4.5 months of which I spent on bed rest). Thankfully, she made it to term. However, at 9 days old, she contracted RSV & bacterial pneumonia, which led to a nearly two week stay in the PCH NICU.
It was very scary to watch my new baby be so ill. I was grateful to have followed my intuition in returning to PCH with her rather than waiting to see her pediatrician after the weekend because she might not have survived. The NICU staff was absolutely wonderful in caring for my little girl, and I even saw some familiar faces from two years ago with my son.
I am especially grateful for NICU Nurse Catherine--and not just for her Australian accent! Her care was just wonderful because it was the perfect blend of professionalism, personality, and hospitality.
Thank you to all the PCH staff who have cared for my babies. I have felt completely confident in trusting my childrens' lives in your hands!
Maddie's Story
I remember how boring Tuesdays always were. Honestly, when I think of how all this started, that's the first thing I think of. Wake up. Go to work. Come home. Eat dinner. Put the kids to bed. Boring. It was my sixth pregnancy...routine, you know? Been there, done that...or so I thought.
It was the tearing pain that woke me up that Tuesday night. Terrified, I woke my husband and ran to the bathroom to see bright red pools of blood in the toilet and on the floor. I was only beginning my eighth month. This shouldn't be happening and there was so much blood and pain!
Rushing to the hospital, we were to find out that I'd had a placental abruption. An emergency c-section was performed to save my life and that of my unborn baby.
The baby would be born premature. Her birth was anti-climatic. No cries, no tears, no pictures, no shouts of joy. We actually had to ask the baby's sex. A baby girl. Baby Madeline. Maddie.
Maddie was immediately admitted to the hospital's NICU. She was hooked up to monitors, breathing apparatus and IV catheters. We were given encouraging information such as how she seemed to be doing pretty well considering the prematurity and abruption and to expect her to be in the hospital until her "normal" due date. That was 7 weeks!
Slowly, over the next 5 days we were allowed to touch and sometimes hold our tiny bundle who by this time only weight 3 1/2 pounds. Her life literally fit in the palm of my hands.
On the sixth day, April Fools Day, Maddie took a bad turn. The nurses had pulled back on feeding her, she was not taking foods and her belly was distending. Something was very wrong. Maddie was diagnosed with necrotizing entercolitis, or NEC. Her intestines were compromised due to prematurity and could not tolerate the feedings. This is fairly common in premature babies but her case was different. Worse. I was told she had to be immediately air-evac'd to Phoenix Children's Hospital NICU.
My husband and I arrived at PCH to wait. And wait. We finally spoke with Dr. McMahon, the surgeon in charge of Maddie's case. She was very warm, compassionate and honest with us. Devastatingly honest. Maddie's NEC had cause bowel perforations; little holes in her colon. The colon was dead and would have to be removed and perhaps all of her intestine as well. If this happened, we would need to prepare for every parent's worst fear.
Again, we waited and per our baby girl's life in Dr. McMahon's hands. Maddie underwent surgery that night to remove the dead portions of her intestine. By the grace of God, only her colon was necrotized and had to be removed. She would have a stoma and would wear a bag while she healed. If the prognosis was good, one day she would be re-attached and would look and function normally. This was the beginning of what would be a six week stay at PCH.
Through every high and low, the doctors, nurse practioners, staff and volunteers were there for our family. They celebrated every step forward and encouraged us on every step back. Still, though, I had begun to lose faith that I'd ever bring my baby home.
Amy, the nurse practioner on duty that Mother's Day, May 10, 2009, was secretly on a mission. She was going to get me the best gift ever. Just as our family was getting ready to head over to the hospital, I got a call from PCH. It was Amy. She asked if I had some time. "Time for what?", I asked. "Time to come and get your baby. It's time she went home with you. Today."
Seriously, the best Mother's Day gift EVER!
Maddie flourished at home. In July 2009, she did get her re-attachment surgery at PCH. Dr. McMahon did the surgery, too. She will never have to wear a bag again!!!
Although she'll always face some challenges, she grows stronger, smarter and more beautiful every day.
Today, Maddie is three years old. With the exception of being smaller than kids her age, no one would ever guess her rough start in life. I give every single bit of credit to Phoenix Childrens Hospital and staff.
These are words parents should never hear or know what they mean: Intraventricular hemhorrage, billirubin, PIC line, Liver Function Test, Retinopithy of Prematurity. But if you do, I sincerely hope your child is lucky enough to be a patient at Phoenix Childrens Hospital.
Joubert Syndrome-Our babyOur son, Christian Truitt was born April 10th 2009 at Scottsdale Healthcare-North Hospital. We knew at his 6 month ultrasound that there was some brain malformations present.
At 2 weeks old he was moved to PCH - the Scottsdale NICU doctors said PCH was the best place for him to be.
He was on oxygen and a feeding tube but his weight and vitals were normal. I was scared to have him transported and knew that sick children are sent to PCH. My husband and I have been monthly supporters but had not needed the services until now.
After Christian's MRI, he was diagnosed with Joubert Syndrome. It is a very rare genetic brain malformation of the brain stem. Our son was on the critical side of the syndrome.
I couldn't believe how loving the nurses, doctors and staff handled our family. I visited the hospital everyday and they kept us informed of results and his status.
We used the Emily Center to research his syndrome and find out what the future might hold for us. Even the cafeteria was comforting to give us nourshising food at all hours.
Christian would have episodes of severe apnea and would turn blue a couple times a day. Suffering reflux, the doctors performed a surgery to tighten his stomach and they also inserted a G Tube for better eating.
At 3 months old, Christian was stable enough to go home. He really didn't cry but you can tell he was communicating with his eyes. We nested in the NICU for one night to show we could care for his special needs. We were home for one night and my husband had to do CPR to bring him back.
The ambulance took him back to PCH. He went through further testing and after mutiple care conferences the doctors told us this is Christian and he is as comfortable as they can make him. He spend one month at Hacienda Nursing Facilty while I had to return to work. We really wanted him home so we hired a nurse to care for him during the day. Home for seven days, Christian had an episode that the nurse was not able to revive him and the ambulance returned him to PICU. The doctors were able to restart his heart. Not only were the Doctors and nurses amazing but the Child Life specialists, social workers and chaplain were very supportive.
Although Christians Journey on earth was only 4 months long, we learned so much about life through him. To learn more about Joubert Syndrome please visit www. joubertsyndrome.org.
Caitlin's storyMy daughter, Caitlin, was a frequent patient of PCH from 1990-2000. We made so many friends with nurses and doctors, that when she would be admitted, nurses would vie for assignment to Caitlin, and doctors would come by just to say hi.
The reasons for Caitlin's admissions were always stressful, but staff was always there for us. Many even became home health nurses who would care for Cate on their off days.
Eight years after Caitlin died, I had the opportunity to become a Volunteer in the PICU. I loved every second that I was there, finally able to give a little of the love that I had received so many year before.
Crohn's Disease at 16In the Winter of 1996 I was diagnosed with Crohn's Disease, and inflammatory bowel disease. By June, I was admitted into Phoenix Children's Hospital due to massive internal bleeding. I had just turned 17 years old.
Within two weeks I had undergone multiple blood transfusions (fourteen to be exact) and eventually emergency surgery- - - two of them. They ended up removing my entire colon because they couldn't stop the bleeding and leaving me with an ileostomy. The trauma of massive bleeding when you're only sixteen is enough, but having to deal with a new medical problem when entering your junior year of high school is even worse.
I was in Phoenix Children's Hospital for two months. The doctors and staff did all they could to make my stay more enjoyable. I could tell them when I wanted to watch my favorite movie on the tv and they would arrange it. They had multiple people come in to talk to me about having an ostomy and how to deal with it. I even had one of the psychologists come in each week to paint my nails. I had been there so long that the doctors got together and made sure that I had the same nurses each shift so that I felt more comfortable, that way it felt more like home.
I just turned thirty this year and not a day goes by when I'm not grateful to the staff and doctors at Phoenix Children's Hospital. I can't imagine what would have happened if I had been born in a different time period, or even just a different city. I might not be here today.
I had so many good and bad experiences at Phoenix Children's Hospital, and the funny thing is, I remember the good ones much more vividly than the bad.
Braeden's BrainIn October 2009, Braeden Popelier had a reaction to the last dose of his MMR vaccine. His temperature spiked to 105, he was slurring his words and said that he saw red out of his left eye, then he passed out.
At Phoenix Childrens they found a cyst on the CT scan, two days later after the MRI, they told us he had a arachnoid cyst in the left lateral ventricle and surprise, he also had a velum interpositum cyst between the two cerebral hemispheres.
Both the size of eggs, very big even in the neurosurgeon's opinion. He had no signs and symptoms that we could tangibly acknowledge, so we waited...three months later, we had an MRI/MRS and were told that although both showed no growth that the velum interpositum was much denser than first thought and that it contained neuronal material/activity, more indicitive of a tumor. The four types of possible tumors were 1) Ganglioglioma 2) Central Neurocytoma 3) Astrocytoma or 4) Dysembrioblastic Neuroepethelial Tumor.
We were given three choices 1) watch and wait 2) biopsy or 3) Craniotomy to remove it. All four tumors are diagnosed by biopsy, all four tumors are surgically removed by craniotomy. We decided that although there was no growth, there was not much room to be wrong and because he had no signs and symptoms we believed that to give him the best chance at treatment possible, we would be aggressive and biopsy it to find out what we were dealing with.
The biopsy was scheduled for Tuesday morning, January 12th at 0830 at Phoenix Children's Hospital with Dr. Adelson. After extracting a bizarre, protein-rich fluid from the "cyst" in the velum interpositum, the preliminary results indicated tumor. Our hearts dropped and I found myself questioning God's greater plan. Why not me God, why him?
The final results came in and we were told they were inconclusive. All of us, including Dr. Adelson felt frustrated. Dr. Adelson again gave us the choice but told us the one that he preferred.
The day before the special PET scan down at Good Sam (which produced a cold reading), my heart leapt. It occurred to me, while I was driving home that God, whom I had prayed to so fervently to, was in his way, answering my prayers. Okay, so the biopsy was inconclusive. So what? It just meant that the only thing the pathologist saw was normal tissue! After the cold reading of the PET scan, I knew that God was answering my prayers but I still felt very strongly about needing to continue.
After many heart wrenching weeks, we decided to go forth with fenestrating both the arachnoid cyst and the strange, huge, mystery encased, cyst-like possible tumor. Whoever heard of a two-for-one deal on brain surgery, right? Well, God has blessed Dr. Adelson with the hands of a healer.
February 2nd was the day. Softey, the Bear (who had been through every procedure) was by Braeden's side and Braeden went into brain surgery that day singing "Its Raining Sunshine" by Miranda Cosgrove. The staff couldn't believe their eyes, in fact anyone who has seen the size of the cysts were amazed by how functioning a four-year-old Braeden was.
Hours passed and Dr. Adelson came out and my breathing quickened as my chest clenched...both were cysts. The velum interpositum was thick with protein-rich fluid but the fenestration of both cysts were a success! Praise God.
Braeden today says that his head no longer hurts and for the first time ever, he's repeating his ABC's and tracing his name, he's remembering what happened at school, I haven't seen the unwavering staring spells and he's happy, happier than he's been in so long. Still there are things that make us wonder, as there was when he was only 9 months of age, but time will heal and in this case relieve the pressure from the brain that had no room to grow.
I believe there is always a reason behind everything and sometimes the answers we get are not the one's that we are initially looking for, but know that God has plans for each of us. He will show us the way, he will protect us and always remember to look up, as Braeden will say----Its raining sunshine!
CF Doesn't Slow Me DownI always felt sorry for my sister Courtney. I wondered how bad it would be to have a disease that you didn't have any choice about having. My sister developed Epilepsy on her 8th birthday by having a Grand Mal seizure first thing in the morning. From that day she had a struggle for over 3 years finding the right meds, nodding off in school and being treated with kid gloves by our folks.
Courtney and I both have struggled with Asthma our whole lives but that seemed very small compared to her Epilepsy. I wondered if I would be as brave and resilient as her if I had a similar problem. I was able to answer that question last year. At the age of 17 I began to have terrible abdominal problems. One day in early fall I was hurting so bad I was doubled over lying on the floor. My mom wondered if it was a reoccurring hernia (I suffered a hernia at the age of 8 and had to have surgery). After a few minutes she pushed on the area that hurt and lifted her hand quickly. I yelped then due to the pain.
My Mom said, "Get in the car I think you appendix is in trouble!" Not long after we arrived at the hospital I was whisked away for an emergency appendectomy. The surgeon said if we had waited much longer it would have burst. After the surgery he told my mom, "For such a skinny kid, he had a huge swollen appendix. In fact he said, "It looked like a Christmas sausage" while holding his fingers about seven inches apart to demonstrate the size.
That was the beginning of my troubles that year. I had just finished my junior season in Cross-Country. I was so glad my appendix waited until after the season to give me a fit! When I was a freshman in HS I was voted "Best First Year runner� In my Junior Year I was voted "Most Outstanding Runner" on my cross-country varsity Team at Lakota East High School. I thought, "Wow, I'm not even a senior yet-college scholarship here I come!"
My parents moved us from Ohio to Arizona because of the economy and to find jobs shortly after my surgery. I had to stay n Ohio with my aunt for a few moths because I was recovering from surgery and we had to sell our home. When I arrived in Phoenix in December of 2009. Things were great for the first month. I met a lot of new friends; I loved the sun and my new high school, Millennium HS.
Soon thereafter I began to have horrible abdominal pains that radiated up just under my ribcage. Our awesome family doctor, Dr Stanly Wen of Goodyear, was worried and referred me to a Gastro Specialist, Dr. Kandarp Patel of Phoenix. Dr Patel examined me and had a number of scenarios. One thing he said was, " I want you to go to Children's for a sweat test for Cystic Fibrosis to be on the safe side� My Mom kind of laughed at this. She said, "Oh he definitely doesn't have CF, he is a great runner!" After we left my mom thought the CF test was a waste of time but said that we had to get it done just to rule it out.
After what seemed like eternity, my mom got a call from Dr. Patel a few weeks later. He told her the sweat test is showing a reading indicative of a positive for CF. My mom broke down at work and cried. My folks labored on how to talk to me with out scaring me. My dad even studied up on what might cause a false positive because he was sure it was a fluke. Dr. Patel ordered another test. We were confident that I would not test positive. The second test read even a higher number.
I was referred to a pulmonologist and to Children�s Hospital. The more detailed tests proved that I had CF. Our family was shocked and heartbroken. My parents asked, "How could he have this and be an athlete and great runner all of these years� We were told that usually kids will have been diagnosed earlier in life. Looking back there were a lot of signs like me coughing and hacking in the morning, puking during or after a cross-country race. I would tell my coach that my asthmas was so bad it made me sick. He chalked it up to nerves and not asthma.
I missed the whole track season in the winter of 2010 because I was so sick. I am now under a treatment program and see Dana Valetta, Nurse practitioner at Children's Hospital Phoenix. Cross-Country training just started at my high school and I am anticipating a great season. I have learned that living with this disease is not fun, I have also learned that every day life and joys are gifts that we should be thankful for.
I look like an every day teenager and run like a person without any thoughts of CF. I am going to continue to run my own life and embrace its challenges, CF is not going to run me!~. In fact I recently turned 18 and my wish was to get a tattoo. My parents were against it at first. I said I wanted a running shoe with wings and a motivational saying to mean that I was not going to let CF or any other hurdle slow me down. My dad actually designed the shoe, he�s a good artist. I chose the Latin phrase, "Tu ne cede malis sed contora audentior ito" which translates English to "Yield not to misfortunes but advance all the more boldly against them"
Jordyn's JourneyIn August of 2010 Jordyn was diagnosed with a Stage IV Wilms Tumor. She had been a completely healthy and normal 7 year old girl until the day of her diagnosis. The aggressive tumor (unfavorable, anaplastic), that had spread from her kidney to her lungs and lymph nodes, came with a 30% prognosis. The day of her diagnosis, the emergency room at a local hospital attempted to send Jordyn to a nearby children's hospital but her parents had no doubts about where they wanted Jordyn to be treated. They refused transportation and drove Jordyn directly to Phoenix Children's Hospital. The doctors and nurses were helpful and informative from the time of arrival. Jordyn had the tumor, along with her kidney, removed two days after her arrival at PCH. After recovery, she began her year long radiation and chemotherapy treatments. Jordyn received medication, chemo, blood transfusions and platelet transfusions at the PCH main hospital and East Valley Clinic. Surprisingly, both locations were places of happiness and fond memories for Jordyn. The staff at PCH became our family and Jordyn was never anything but comfortable there. Jordyn has recently completed her last round of chemotherapy and is now in remission. We have the staff at PCH to thank for making a seemingly desperate and miserable situation into one that we can look back on with smiles and pride. We will forever be grateful to PCH for our beautiful, and now, healthy baby girl.
Chris TaylorMy ten year old son Chris was diagnosed with a medulloblastoma in April 2010.
He was hospitalized the majority of the five months that he was undergoing treatment including chemotherapy and radiation.
He passed away in September 2010 shortly after his eleventh birthday.
During our time at Phoenix Children's however, we received excellent care. The compassion and dedication of the staff was obvious to us and greatly inspired me.
I have since created the Christopher Taylor Foundation to help make a difference in the lives of children battling cancer and their families.
It is an honor to use my experiences to contribute back to Phoenix Children's Hospital and the surrounding community.
Patrick Taylor
The Amazing Carson JamesOur son Carson was born on September 11th, 2010. We were expecting a healthy baby boy based on how smoothly my pregnancy went. We were surprise when the Amazing Carson James was born. He was born with a heart defect known as Transposition of the Great Arteries. His heart was not able to supply oxygen rich blood to the rest of his body and within minutes he turned blue.
After a quick helicopter ride he was admitted and diagnosed. We met Dr. Pophal and he explained to us that Carson would need to go to the cath lab and have a septastomy done. A procedure where they would make a hole at the bottom of his heart. Dr. Pophal was great and answered all of our questions.
Several days later Carson grew stronger and stronger. At 4 days old he was ready for his open heart surgery. We met Dr. Nigro and told him how scared we were and he assured us that our son was in good hands. Several hours later Dr. Nigro came in with a smile on his face and told us that Carson did amazing.
Two weeks later we brought the Amazing Carson home. He is now almost 3 years old and the happiest, sweetest little boy. He loves playing sports and keeping up with his two big brother. Our family thanks Dr. Pophal and Dr. Nigro every night in our prayers. Carson was so blessed to have such great doctors. Carson is truely amazing...just like his doctors.
Andre's Cancer Journey
On the night of October 2, 2010, I had a fussy 9 month old baby boy. I did not know what was wrong with him. Being a first time mom at 17, I asked my mom for her advice on what I should do. We concluded that he might have a really bad ear infection and needs to be seen.
At the moment, I didn't have heath insurance for my son, so I decided to take him to Phoenix Children's Hospital to have him checked out. We went in on a slow day so we were seen very quickly. The resident checked Andre and said his ear looked ok and was on her way to get the discharge papers started. I was relieved it wasn't an awful ear infection as we had suspected, but I still had a fussy baby.
Then an ED Physician walked in and decided to examine my son. She touched his tummy and noticed he was tender to the touch and request a x-ray. Little did we know that x-ray was going to change our lives dramatically.
After the results of the x-ray we given, the physician came in and told us the finding and said "The x-ray shows a mass on his upper abdomen. I can't quite say what it is, so we will get a CT done on him just to make sure."
My mother and I were puzzled at the findings and kept on repeating what it was that we had done that day that could make a mass show up on the x-ray. Finally at 3 a.m., we had a CT Scan done and were brought back into our little room to wait for the results. I took a nap with Andre in my arms since he had finally gone to sleep.
An hour and a half later, 2 doctors and a nurse walk into our room to break the news. "The CT scan shows a tumor on his liver. I cannot give you much information on that, but the oncologist upstairs will talk to you about it in the morning. But it looks like chemotherapy and surgery will be needed."
I start to cry to know that my son was diagnosed with cancer. After speaking to the oncologist and to the surgeons, I felt good about the procedure. They talked to me straight forward and didn't sugar coat anything. They made me feel good about leaving my son's life in their hands.
Surgery went great and his recovery went well. He was diagnosed with Stage 1 Hepatoblastoma. Chemotherapy was awful on my son, but the nurses at PCH did everything they could to make this experience not so bad for the 4 months it lasted.
With kindness and gentleness, my son spent some great times in the hospital. If it wasn't for the staff, Andre's journey wouldn't have been as good as it went. I am thankful for the nurses. My son is currently in remission. He is a happy 2.5 year old and a proud big brother.
Paelyn's StoryDid you know that even princesses can have Down's Syndrome?
Our nightmare began early the morning of April 12th 2010. Our sweet 2 month old little girl began going into respiratory distress. She was transferred from Kingman, AZ to Phoenix Children's Hospital.
This was the first time I have ever been in the hospital. This was the first time I have ever had a sick child. Paelyn became progressively worse and Dr. Beyda decided to intubate her. Upon intubation, Paelyn coded and for 48 hours after that and she was very unstable.
Within that time frame I was thrown into a world I had only seen on t.v. hospital drama shows. I had met many physicians, specialists, respiratory techs, nurses and therapists.
Decisions had to be made and there was the possibility that we might of lost our sweet little girl. Paelyn was born with Down's Syndrome and was seemingly born very healthy. Little did we know that Paelyn was silently aspirating her formula and suffering from silent reflux aspiration as well. Slowly her lungs were being damaged....slowly she was deteriorating.
By the time decisions were made to transfer Paelyn to PCH, she was a very sick little girl. I thank God everyday for the knowledge of the doctors, specialist, respiratory techs, nurses and therapists at Phoenix Children's....they saved her life more than once. Paelyn ended up staying at Phoenix Children's Hospital for 4 months with very few breaks in between.
We had no family in Arizona and because of Paelyn's extensive medical needs we needed to move to Utah where our family lived and where a children's hospital was so that we could be close to both for support and help and so that Paelyn could receive good medical care.
My heart broke to leave Phoenix Children's. Paelyn received the best of the best care there. Dr. Beyda, Dr. Menon, Dr. Tafoya, Dr. Tellez, Dr. Buttram were all involved in Paelyn's PICU stay and in saving Paelyn's life. Dr. Lacey performed an absolute miracle in saving Paelyn's arm when a blood clot formed after an attempt at putting an arterial line in Paelyn's left arm failed. It was expected that she would lose this arm. Dr. Lacey's skills are absolutely amazing and we are thankful to him every day. Dr. Acosta performed several life saving surgeries on Paelyn...again...what a miracle worker he is as well.
The respiratory techs. at Phoenix Childrens became some of our best friends...Allyson, Debbie, Cindy, Roz, Nathan to name a few. I wish I could remember them all. The IV Team who understood Paelyn's history of her poor veins and respected that history we will forever be grateful to. The entire 4th floor at Phoenix Children's Hospital took amazingly good care of Paelyn and in helping her to get home safe and healthy.
Again, I wish I could remember names of all of the nurses that aided in saving Paelyn's life....Liv in Pod E and Dana in Pod D we will never forget. Astrid and Jen in Pod D we will never forget as well. On the 4th floor, Paul, Kathy, Amy, Jen, Emily Nicki, Sara, Erica, Caitlin, Samiya, Marie and Keva. The PCT's that gave Paelyn amazing care were Liz, Evalyn, Kayden and Madara. And last, but never least is our dear Dr. Hartley. If anything, he is first and foremost to us in taking care of Paelyn. He saw Paelyn first when she arrived from PICU to the floor. He saw her to the very end of her stay after 4 months.
The few short moments that we did get to take Paelyn home, he would call to see how she was doing. We lived 4 hours away so he would call the ED department there and speak with the doctors there to let them know of Paelyn's condition when we would bring her in. We could call him at anytime with any problem and he would take the time to listen and to help Paelyn with every need she had. We felt very taken care of.
I can honestly say that there isn't anything that should have or even could have been done differently with Paelyn's stay at Phoenix Children's Hospital. My heart is there with Phoenix Children's Hospital and it will always be there. What every person did for Paelyn from the PCT's to the Intesivists to the RT techs to the nurses will be in our prayers every day.
We love you all so much and have a new found respect for any one who works in the medical field. You all truly gave Paelyn a chance to become all that she can be...even a princess, for she truly is just that.
Caring HandsHi! My name is Lindsey Eaton and I came in to Phoenix Children's Emergency Room with Spontaneous Pneumothorax (a collapsed lung). My vascular system was being compromised because there was a lot of air on my chest cavity, so they had to put in a chest tube to try to drain the air.
I was admitted into a room on the fourth floor at 1 a.m. the following day and my nurse, Lauren, was phenomenal with me. She took great care of me and gave me pain medicine whenever I needed it that day.
A couple of days later, the doctors put a new chest tube in me to settle the leak, but it didn't work. Dr. Lacey came into my room to talk about doing surgery on me that day.
Over the next seven days, I was under the care of Lauren, Kathy, Dr. Beyda, Dr. Clarke, Dr. Pinckard-Hansen, Dr. Klee, Dr. Lacey and several interns at Phoenix Children's. Dr. Lacey did a thoroscopic blebectomy on me and he was a terrific surgeon. Dr. Lacey's nurse practitioner, Kelly Scoggins was amazing with me during surgery as well. I was fairly nervous for the surgery but the surgical team calmed me down greatly by providing me with tender loving care.
In the end, I was released on the day before Thanksgiving, but was kind of sad and happy to leave the hospital. I am so thankful that all of the people at Phoenix Children's Hospital who took great care of me and that I had a memorable experience. I will remember it for the rest of my life.
Eryn's StoryWhen I was 4 years old, I got sick. I was not being myself, and all I did was sleep. My Grandma would wake me up to make sure I was okay, and then I would go right back to sleep. My Grandma called the doctor on a Wednesday and they said I had all the signs of a stomach bug, so on Thursday, my Grandma took me to the doctor. The doctor said it was the stomach bug and to take me home.
But by the evening, my breathing had started to get bad, so my grandma called my Papa and told him to meet us at the ER. They checked me out, and did a urine sample. They said that they found sugar in my urine, and to call whom we needed to because we were going to Phoenix Children's Hospital.
They took us down by ambulance from Prescott Valley. My Papa had to get my stuff ready and was going to meet us there. When we got to the PICU, my grandma finally got scared, everyone was around my bed, and all i wanted to do was sleep. I don't remember anything about the ambulance ride or the PICU, but my grandma said they were all nice to me.
I am doing better now that they have me on insulin and taking my shots like I am suppose to. It has changed our lives, but we are dealing with it.
My doctor and nurses for my diabetes are really nice to me. Phoenix Children's Hospital has made me feel normal again, and I have to go there once a month.
Every time i go, they are all so nice to us.
I love everything they do for us kids. I was down on 3rd floor - East after the PICU, and I even got to sit at the nurses' station and color with a new friend I made, and the nurses. The nurse told me about the playroom on the 4th floor, so we got to go up there and play also. PCH is the best ever. Thank you for everyone there and the PICU nurses for saving my life.
Love, ERYN.
Jordan's Heart
Jordan was born in October of 2011. She was the first granddaughter born after five grandsons.
She seemed to be healthy with the exception of an infection that kept her in the hospital for a few days after her mom was released.
She continued to get sick often and after many back and forth trips to the ICU at the age of three months, Jordan was diagnosed with a severely defective and malformed mitral valve.
Doctors did not want to rush into surgery, but her valve worsened. She had open heart surgery at five months of age. Three days later, she had to have emergency surgery to relieve pressure from one of her drainage tubes. She bounced back from the second surgery and we thought we were through the worst of it.
On Mother's Day 2012, at seven months old, Jordan had a seizure. She was rushed to PCH and it was determined that she had suffered from a stroke. The stroke was caused by a blood clot around her mechanical heart valve that traveled to her brain. She spent two weeks at PCH, and seemed to recover well.
Two days after being released she went in for a routine echocardiogram, and they found the prosthetic valve was not functioning properly. It is so rare that a baby with a mechanical mitral valve suffers a stroke that PCH doctors consulted with other doctors from across the country. After being in the ICU for two weeks, they decided the best way to proceed was with a third surgery to get the valve to work or replace it if need be.
Jordan had the third surgery on June 5th. The third surgery showed that Jordan had a blood clot that had impaired the function of her heart valve. The clots were cleaned off and the valve seemed to be working well. She was prescribed blood thinners to prevent further clots.
She had a difficult time recovering from the surgery. After a month of recovery and working to get proper medication dosages, Jordan was sent home. A few days after her release, Jordan developed a fever. Making sure all bases were covered, her mom brought her to the emergency department. She had a high white blood cell count and was admitted, yet again.
The next day, Jordan had a seizure in the presence of her mom, nurse and a doctor. She had an MRI that showed bleeding on her brain from the blood thinners that she was on for her prosthetic valve. She was rushed into surgery to remove the blood and relieve the pressure on her brain. Her fourth surgery went well and she is steadily recovering. At this time, Jordan is eight months old, and doctors have determined that her prosthetic valve is not the right option for her.
They are working with our family to find a solution to give her the best possible future. She is a fighter and has continued to amaze everyone with her strength and resilience.
Surgery within 5 days of lifeIt was five days after the birth of my second son, and I was bringing him to his scheduled well health check up with his pediatrician. Little did I know the day was going to end with my 5 day old son needing surgery for a rare disorder.
As soon as we arrived in the doctor's office my son began to throw up yellow bile, and immediately his pediatrician knew there was a problem. She sent us immediately to Phoenix Children's ER with worries he may have bacteria in his stomach - but that was not the case. Within 3 to 4 hours I was notified my 5 day old son had a Malrotation in his small intestine and would need emergency surgery.
I was blown away with the news, as I thought maybe he had a little infection and would just need antibiotics. I was also amazed with how quickly he was attended to. I didn't even need to stop in the ER - I was brought straight back and he was given immediate attention. Within an hour of finding out he needed surgery, he was taken by a nurse to be prepped for surgery. My husband and I were beside ourselves. With the possibility of there being serious complications on a newborn, we could not hold ourselves together. It was within the hour we received a call that the surgery was beginning, and I must say I have never felt such heartache in my life. As we sat in the surgery waiting room, I don't think a moment passed that we weren't praying. After about two hours his surgeon, Dr. Bae, came out to relieve us of some of our worries - that our son was still with us and the problem had been resolved. It was the greatest news I have heard in all my days. The struggle wasn't over yet, even though the surgery was over, it's difficult for a newborn to be on pain meds. He was now recovering in the ICU, which is a very serious, saddening place to be.
As we entered the room we could see him hooked up to almost anything and everything in the room. It's not easy to see your helpless child in such a condition. He still had a few days to really come out of it and be in the clear, and it was a painful couple of days. With a breathing tube down his throat and another tube down his nose, with IV's in both hands and his legs even hooked up to some type of monitoring, the poor little man didn't have much room to move. But in a few days time, more and more tubes came out and he was finally able to be held, and eventually even fed. I never imagined myself living at PCH, but there we were, roaming through the cafeteria in our pajamas in desperate need of the strongest coffee available.
I look now at the PCH and my heart speeds up a little, for knowing the fact I owe my life and all my gratitude to the staff and surgeons who saved our son's life. Without him I don't know how my husband and I would of survived, and because of their great love and dedication to children, I still have the chance to love and care for my beautiful baby boy. I cannot express how thankful I am to them for saving my boy, and neither can his family.
Thank you Phoenix Children's Hospital I will never forget how you changed our lives forever.
Brendan was born with multiple congenital heart defectsRead More
Brendan: The Rare Hearted Wonder
My son Brendan was born in August of 2010 at St. Joseph's Hospital. We are from Flagstaff, AZ and went home after about a week in the NICU there. The docs there had done an echocardiogram just to check Brendan out. They called a week after I had gotten Brendan home to say that their might be something wrong with his heart, but maybe it was nothing. So, I scheduled another echocardiogram for the end of October in Flagstaff, and forgot about it.
In October of 2010 I took Brendan into his wonderful cardiologist, Dr. Rockow, in Flagstaff, thinking that nothing was going to be found and he'd be fine and we'd just go home. I was wrong.
Dr. Rockow seemed concerned as he started going through the echocardiogram and eventually just stood up and muttered that he'd be right back and he needed to make a phone call to Phoenix. When he came back he said that Brendan likely had endocardial fibroelastosis (EFE) which is a fairly grim diagnosis, because the left ventricle is surrounded by muscle tissue to help it pump. However, eventually, it can start to squeeze the ventricle shut and is generally fatal by the age of 2.
The other thing he mentioned was that I would need to take Brendan to Phoenix to St. Joe's where the pediatric heart team was and they would look at him because he had blood flow going into his left coronary system, but he wasn't sure where the blood was coming from (aka. the blood is supposed to come from the aorta out the coronary artery and through the vessels into the body).
In Phoenix, with help of a really nifty CT scan, it was determined that Brendan had a very, very rare defect called ostial atresia of the left main coronary artery. Brendan had no flow or very restricted flow from the aorta into the left main coronary artery. Instead, his heart grew collateral arteries off the right coronary system that hooked into the left side; essentially the right side of Brendan's heart was providing all of Brendan's blood flow to his entire body. Remarkable? Yes. Scary? You betcha.
Brendan had his first heart surgery in November of 2010 to attempt to patch the left main coronary artery into the aorta. For whatever reason, the scar tissue on the aorta started to be a problem and Brendan went back into surgery in March of 2011 to fix the three stenosis, along his aorta.
Finally, on a sunny day on April 11, 2011 we had come down for a routine heart catheritization - no big deal. But for some reason, when they started the procedure Brendan coded - and not a quick code either. It lasted for a full 38 minutes. Everyone available from the pediatric cardiac floor at St. Joe's did compressions, one after the other, and the anesthesiologist used the bag to help him breath.
Eventually, just as they were about to call him done, Brendan came back; no rhyme or reason, and they were able to stablize him and finish the procedure.
At this point they were worried and had called Dr. Nigro back from a confrence because the general consensus was to do a coronary artery bypass graft (CABG) because the patching at the coronary artery was narrowed to the point it was no longer effective.
Brendan is one of the youngest patients in Arizona to receive a bypass (to be quite honest, I thought they were just for old people.)
We finally got to go home and the bypass worked for eight wonderful months.
On December 27, 2011, we were at home when Brendan fell over and seized up (due to lack of blood flow to the brain). I could not get him back alone so I called 911.
Brendan was medi-vaced from Flagstaff Medical Center to Phoenix Children's Hospital and has been here since. The docs finally had to sit me down and offer Brendan the chance of receiving a heart transplant. There were no more options for my son and his rare and frustratingly complicated heart. I agreed and we went through the process and on January 19, 2012, Brendan was placed as a 1A (top tier) on the UNOS list to wait for a heart transplant.
Brendan would not be coming home until he received a heart and the 5th floor CVICU became our new residence. I can tell you that I slept on a bench for at least 4 or 5 nights out of the week in the CVICU for the first several months. I am a single mother and I would go back to Flagstaff every weekend to see my older sons and work delivering papers.
Brendan and I would walk the halls constantly, mostly because he hates to stop moving more than anything in the world. The nurses finally determined that it takes 246 steps to do a full lap around the unit and if you do it 20 times, this equals to about a mile. I have walked many miles here.
I also started to reach out to other families, a lot of the time it was other heart families but I didn't even mind providing support to other moms and dads on other floors. We're all stuck in the nightmare together, no matter what our kids are sick with, and we might as well get along and make each other's days brighter.
I have cried with other parents, and I have laughed too. It's hard to be human in a place like PCH, but giving even a second of your day for another parent, even on the elevators, can mean all the world to a parent who doesn't know what to say, with all the bad medical news they're being given by the doctors. Just because I knew Brendan was in heart failure, didn't make it important to help others, and I hope that if there is anything that Brendan will remember of this is that he saw how we brightened other people's days. He could give looks, but was also quick to touch fingers with you or smile or shake his tiny mohawked head at you, or even give a great giant dinosaur screetch that would let everyone on the floor know that he was there and awake.
On June 2, 2012, Brendan got his heart transplant. He came back on ECMO (which is essentially the mobile version of the bypass machine they use in the OR) and he was on a ventilator. I thought I could handle it, but it was rough. I walked around in a fog for a few days and it's been a rollercoaster ride since. I relocated all of our stuff, and his older brothers down here to an apartment in an "interesting" neighborhood and we are anxiously awaiting our orders to go home. He will be on a special medication pump because he is one of the rare few kiddos that has to take weird meds for pulmonary hypertension that he developed probably around his second surgery, due in part to the EFE.
He will also go home on oxygen and a feeding tube as well but at least he is alive and I think he has the best doctors and nurses in the country working on him and looking after him here at Phoenix Children's Hospital.
Dr. Nigro and Dr. Pophal have been instrumental in Brendan's chance at new life and I know that he will make them proud. He has touched so many hearts here and every nurse, security guard, food service person and cleaning person to set foot in the CVICU knows and loves him as if he were their own. There are so many people rooting for him, and knowing he'll be better than ever, as he grows and honors the donor who allowed him to survive.
Scottsdale Satellite Opens
Phoenix Children's opened its third satellite location to bring care closer to home for families who live further from the main campus. The Scottsdale location offers a range of pediatric specialties and services by appointment, including Cardiology, Endocrinology, Gastroenterology, Nephrology, Neurology, Neurosurgery, Orthopaedics/Sports Medicine, Pulmonology, Speech Therapy and Urology. On nights and weekends, the location becomes an urgent care center administered by physicians and nurses who have advanced training in both emergency and pediatric medicine.
The Scottsdale Center features ten exam rooms, one treatment room and one radiology/fluoroscopy suite. Diagnostic services include X-rays, EKGs, echocardiograms, ultrasound, laboratory/point of care testing, pulmonary function testing and swallowing function studies (modified barium swallows).
"The Phoenix Children's Scottsdale Center is an important part of enhancing our geographic delivery network, bringing our breadth and depth of subspecialty pediatric clinical expertise to families who need us," said Robert L. Meyer, president and CEO of Phoenix Children's.
Senior Spine SurgeryI was diagnosed when I was twelve with scoliosis and was told that it was very minor and wouldn't progress fast. Yearly, I would go to a doctor appointment with Dr. Gregory White just to make sure things are staying the same.
Year by year, there would be a small increase but nothing to worry about. One year, they realized I had two curves instead of one but still was nothing to worry about. I was young and really didn't realize what was going on.
In 2012, my senior year of high school, with graduation just a few months away, I had my yearly appointment as usual in January. It started well, until we got my x-rays back and realized I started to get Kyphosis.
Now, I know everyone has a little bit of it, and it is natural, but as the years went by, my back pain increased, I couldn't do a lot of things, and worst of all, I couldn't breathe. But I thought that was all because of my curvy spine.
At this appointment in January, Dr. White didn't even beat around the bush. He suggested we look into surgery because by next year, my lungs would be crushed and would collapse, and it didn't look good.
It was a lot to take in and I had to have some time to process. I came back the next week and with a lot of convincing and research. I agreed to get the surgery done, the only catch was... I started ASU in the fall and I was unsure if I would have enough time to heal and get back to myself.
We were very lucky when we found a Friday, on June 22, to have the surgery. That left us with enough time on both sides to do a family vacation for summer and to heal after the surgery.
June came around and I had the surgery. It was the hardest thing to do and such an emotional ride for me to go through.
The recovery afterwards was hard to endure. Learning how to walk again, not being able to move myself in bed, not being able to pick up things or sit down without the aid of my walker.... it was all stuff that I struggled with.
Two weeks after the surgery, I trained myself to squat. I stopped using my walker after 3 weeks and started driving after a month. All of this would not have been possible without the help of my surgeon who has been there since day one, and his assistant Patti who has always been eager to answer my questions and help if needed.
I am currently in college full time, moved away from home, and I won't say there aren't daily struggles that I come in contact with, but its true when people say a positive attitude will get you through anything, as well as distractions.
The experiences I had with all the nurses, aids, doctors, therapists, and much more were amazing. They were so kind and eager to be there whenever I needed them. Having this surgery has changed my life forever. It might sound like a cliche, but its true. :)
Kidney stone mysteryMy name is Addison and on that Thursday morning, I woke up with searing pain in my lower left side. My mother thought my appendicitis had burst. She rushed me to Banner Health Center. They thought it was constipation.
My side still hurt and during this horrible pain I could not eat or drink and I was vomiting every 10 minutes.
My mother gave up and took me to my Pediatric NP, who had said I had a urinary track infection. I was put on antibiotics, but I could not keep them down.
Then the next day my mother got smart and took me to the Phoenix Children's Hospital ER.
While there, the first doctor said i had an enlarged kidney. The next morning I went back, and I was still throwing up. But after a CT scan, they said I had two 6 cm kidney stones; one in each kidney.
I had to stay overnight at PCH. The next day i had an operation they got them out and i felt better!
We continue her GraceMylee always stumped the medical community. For the longest time her doctors would joke she would be written in medical journals as having "Mylee syndrome"! All jokes aside, her brain started to deteriorate in December of 2009. I will never forget the words her neurologist used, Mylee has a neurodegenerative progressive disease.
Mylee was presented with challenges from the very beginning. She spent time in the NICU after her birth due to aspiration issues. She would eventually have lung disease because of aspiration and spent countless days in and out of the hospital her first year of life. After her 1st birthday and 2 MRI's later, her neurosurgeon would perform a brain decompression to fix her Chiari Malformation. By this point in her medical journey, Mylee saw many specialist to help in almost every organ system. She also required a gastrostomy tube for nutrition. Mylee was unable to e at or drink anything by mouth. We now believe the initial surgeries requiring Mylee to be able to live a productive and healthy life did just the opposite. The disruption of the Mitochondria caused her body to go into a downward spiral and over the coarse of next 4 years she frequently spent time in and out of the hospital and worked with therapists each week to improve her different abilities.
In December 2010, Mylee Grace our precious 3 year old at the time was diagnosed with an incurable neurodegenerative disease called Mitochondrial disease. On June 21, 2012 shortly after 6am, our beautiful little girl took her last breath. She fought so hard and always with a smile. Our daughter, our sister, our teacher, our friend - she was a believer and she taught so many the beauties in life. She taught us to Never Give Up!!
We are grateful for her palliative care team at Phoenix Children's hospital. Her hospice/palliative care physician, team of specialists, social worker and child life specialists worked collaboratively together making Mylee's quality of life and time with her family very comfortable. We are forever grateful and consider these amazing people a part of our family. We want to continue Mylee's Grace within the walls of Children's Hospital by bringing awareness and help funding for Phoenix Children's Palliative Care Program.
Forever Thankful,
The Eaton family
Phoenix Children's brings care closer to home for the Southwest Valley.Read More
Fourth Satellite Location Opens
Phoenix Children's opened its fourth satellite location to bring care closer to home for families who live further from the main campus. The Center complements children's health care services already in the community, with comprehensive specialty and subspecialty care by appointment on weekdays, and advanced pediatric urgent care with no appointment needed on nights and weekends.
Specialty services offered at the center include Hematology/Oncology, Gastroenterology, Neuro-psychology evaluation/testing, Orthopedics/Sports medicine, Fracture clinic, Psychiatry, Pulmonology, Urology, Developmental pediatrics, Endocrinology, Diabetes education classes, Ultrasound, Radiology, Fluoroscopy, Lab, Rehabilitation services including Occupational Therapy, Physical Therapy and Speech Therapy, and Infusion services.
Urgent care services are administered by physicians and nurses who have advanced training in both emergency and pediatric medicine, all trained to be 100% for children.