Asher's Story

My husband, David, and our three children Alex, Andrew, and Madeline lived in Pensacola, down the street from my parents and Sacred Heart Hospital, for about six years before moving to Las Vegas.  With three children, we had our share of visits to the Sacred Heart Emergency room!  Andrew, our “middle” child kept us, and himself in stitches, literally.  Madeline spent a week at Sacred Heart when she was just under a month old and contracted aseptic menengitis.  Neither of those experiences were life-threatening, but I was impressed with the excellent facilities and top doctors that were saving lives there every day.  I remember thinking how fortunate I was to live in an area with that level of care and such tremendous resources.  Of course I never dreamed I would need to call upon Sacred Heart to save a life.

My fourth child, Asher, was born after we moved to Las Vegas.  He was delivered by emergency c-section on May 21, 2001.  Two days later, he had his first seizure.  After a battery of tests, Asher was diagnosed with a rare brain malformation called Dandy-Walker.  Asher spent the first three weeks of his life in the Neonatal Intensive Care Unit at Valley Hospital in Las Vegas while doctors tried to get his seizures under control.  He was one of the largest babies in the NICU  weighing 8 ½ pounds!

The next two years in Nevada were a grueling blur of hospitalizations and doctor’s visits.  Asher underwent seven surgeries and eight hospitalizations in that time.  Every medical specialty was represented in Asher’s care, from cardiologists to gastroenterologists and otolaryngologists.  He even had an ophthamologist and a urologist.  He was definitely covered from head to toe!  Amazingly, there wasn’t a qualified pediatric neurologist in Las Vegas.  We ended up traveling to Stanford University in San Francisco, California, for some of his most critical doctor visits. 

The hospital in Las Vegas was adequate, but none of the rooms were private and that sometimes made it difficult for David or I to stay there overnight.  If another mother was there, David wasn’t allowed to stay, and vice versa.  In addition, the stress of being 2,000 miles away from our immediate family proved extremely difficult.  My parents, who still lived in Pensacola, were traveling to Las Vegas nearly every month and staying weeks at a time to help us care for the other kids while Asher was in and out of the hospital.

In 2003, when Asher was 2-years-old, David and I decided we needed to move back “home.”  Of course, being close to family is important, but I can honestly say the decision was made easier because we knew Pensacola had one of the finest children’s hospitals in the country.  We were comforted knowing Asher would be in the hands of some of the most experienced healthcare professionals just minutes from our new house. 

We knew we had made the right decision because from 2003 to 2005 Asher was treated at Sacred Heart Children’s Hospital more than a half-a-dozen times for everything from minor diagnostic tests to major surgeries and several bouts of pneumonia.  Each time, while Asher was ill enough to need to be in the hospital, non of his illnesses had been life-threatening.  Even though he has a seizure disorder, he had never been hospitalized because of seizures.  In fact, Asher had been seizure free for almost two years and we began to think he might outgrow them. 

Unfortunately all that changed in the early morning hours of May 21, 2005.  As Asher started to wake up, he had a seizure.  We were disappointed, but not really scared since we had seen him do this before and we knew what to do: hold him, keep him comfortable, and let the seizure run its 60 to 90 second course.  But, when three minutes passed and Asher was not showing signs of coming out of the seizure, we made the call to 911. 

Asher was rushed to Sacred Heart Children’s Hospital.  It took a team of doctors, nurses, and respiratory specialists more than an hour-and-a-half to get the seizure under control and keep him alive.  As I stood in the emergency department treatment room watching the swarm of activity surrounding my son, I was amazingly calm. 

Because we had been to Sacred Heart so many times in the past, I never once felt scared for Asher’s life.  In fact, when they cut his little Batman pajama top off to get to his chest, I thought, “Wow, that’s a little extreme…” never once thinking that Asher’s life was in danger.  In fact, all I could think was, “That pajama top belonged to Alex (my now 15  year-old) it's an heirloom!”  Even though Asher had never had a seizure like this one before, I remember feeling a true sense that he was going to be okay.  He was in great hands with a group of highly skilled professionals all trained to do what they were doing – saving Asher’s life.

Each person involved in saving Asher that day is precious to me.  Even while they were working quickly to keep Asher alive, they treated him with compassion and tenderness.  I’ll never forget Dr. Patterson, the pediatric intensivist, who took care of Asher in the emergency room.  Once Asher was stabilized he personally walked us up to the Pediatric Intensive Care Unit, breathing for Asher using a special “bag” the whole time.  Normally, this is done by one of the respiratory specialists and the doctor has gone off to write his notes.  The special care shown by Dr. Patterson was repeated time and again by other doctors and nurses during Asher’s six-day stay in the Peds ICU. 

Clearly, Asher was extremely sick.  I learned that what happened to him was called a “status seizure.”  This meant that his body wasn't capable of recovering from the surge of electricity his brain was discharging.  He did not wake up for two days while the medication worked to keep his seizure under control and machines were put in place to help him breathe. 

One afternoon, Dr. Northup, another intensivist, came to check on his progress.  While he gently examined Asher, who was still in a coma, Dr. Northup noticed Asher drooling.  Without hesitation, Dr. Northup reached over and wiped Asher’s mouth.  To me, that was a genuine act of caring.  

Gradually Asher began to heal and five days later, May 25, 2005, he was able to celebrate his 4th birthday at the Hospital.  Even that event was made special thanks to the people at Sacred Heart.  The Hospital’s Child Life Specialist helped me arrange a private party for Asher in the Play Room.  She provided me with decorations, plates, utensils, and even a gift for Asher.   As a parent, little things like throwing a birthday party and the ability to include my child's siblings, grandparents, and friends mean as much to me as the cutting-edge equipment and top-notch facilities. 

Every time Asher is in the hospital, his brothers and sister come to visit.  It’s the “extras” like the video library and games that help make them feel at ease.  These things help bring a sense of normalcy to an otherwise stressful situation.  The nurses go out of their way to include them and make them feel comfortable, too.  That's important.  They never feel like they are in the way or unwelcome.

Because of his condition, Asher will always have unexpected visits to Sacred Heart.  In fact, we started the first week of 2006 here because of another bout of pneumonia.  In December that same year, he had another seizure and was once again, rushed to Sacred Heart.  Although that visit to the Emergency Room didn't end in a hospital stay, less than six months later, on April 10, 2007, Asher had another status seizure.  This time, however, he did not recover quickly.  Once he was stabilized in the Emergency Room, he was moved to the PICU where he spent eighteen frightening days.

Because we had prior experience with the doctors and nurses in the PICU, we felt at ease even though our son was gravely ill.  Initially we all had the same expectation: that Asher had “done this before” and he would need help recovering from the seizure, but that he would bounce back within a few days.  We were all wrong.  Asher's condition worsened drastically within twenty-four hours and by the third day in the PICU, he needed a blood transfusion. 

David and I felt completely helpless and totally dependent on the doctors, nurses, and respiratory therapists in the PICU.  One of the most difficult things as a parent is to be forced to give up the control you always had to someone else.  In that environment, however, it was a little bit easier because it was clear, very clear, that everyone involved in Asher's care was personally invested in his recovery.  Each day we watched as Asher's team fought to keep him alive.  That's an incredible thing to witness.

His nurses and other staff members took a genuine, special interest in him as a person, not as a patient, and there is a real difference.   My son was a five-year-old in a medically induced coma and yet each nurse, doctor, respiratory therapist, phlebotomist, and x-ray tech that came into his room to work with him spoke to him.  They treated him with dignity.  They were concerned with whether the curtains were closed when they needed to change his diaper or move him to respect his privacy.  They used gentle words and voices and soothing tones even though he was unresponsive when they had to draw blood or rearrange him in the bed knowing that if he were awake, he would probably be uncomfortable.  Again, the level of respect shown my little boy was tremendous.

Nearly a month later, Asher was discharged from the hospital.  Prayer, highly skilled doctors, and the latest medical technology worked together to help bring him home.  Because of his ordeal, Asher suffered scarring of his lungs and is at greater risk for lung infections, but thankfully, we know he will always have the best doctors to help him out when he needs them again!

My family is eternally grateful that Sacred Heart Children’s Hospital is right here in our own backyard.  Not many cities the size of Pensacola can boast such an incredible wealth of medical expertise and technology.  I’m sure that is what attracts the best doctors to Sacred Heart.  Physicians like Dr. Patterson and Dr. Northrup and their colleagues have their pick of facilities across the nation.  They choose Sacred Heart because they know the community will support them in every way.  They are confident they will be given the tools necessary to perform miracles – and I truly believe miracles happen at Sacred Heart every day.