Emmett’s Story

Saturday, October 16th, 2010 was supposed to be a day of celebration. We were going to celebrate our son Emmett’s first birthday with a party for him and his brother Ethan, who was turning three. That morning Emmett woke up with a fever and was acting unusual. When his symptoms intensified, we felt he needed to be seen by a doctor. My husband Michael took Emmett to the urgent care, where he was diagnosed with either the flu or a possible reaction to recent vaccinations. Over the next two days, he became lethargic, was coughing up lots of mucus, had no desire to eat and was unable to sleep. We decided he needed to be seen by his own pediatrician, but while we were getting ready to leave, Emmett started vomiting up blood.

After hearing Emmett’s symptoms, the pediatrician immediately sent us to the Emergency Department (ED). When we arrived, Emmett was given two breathing treatments and the physician ordered a chest x-ray. The x-ray showed that an object was lodged in his esophagus. I was shocked because there had been no sign of him choking on anything. The doctor informed us that the object in Emmett’s throat was a button battery and that the radiologist was able to identify the serial number of the battery in the x-ray. I was sick, taken aback, confused, ashamed, embarrassed, lost, angry, sad, hopeless and nervous.

An ambulance rushed us to Phoenix Children’s Hospital (PCH) where we met Dr. Egan, a pediatric trauma surgeon. Within 20 minutes of our arrival to PCH, Emmett was rushed into the operating room for the removal of the button battery.

Three hours later Dr. Egan came to inform us of the damage that had been done to Emmett’s poor little body. His esophagus was severely burned. Emmett was not able to breathe on his own, so a ventilator was placed for his breathing support. Each day in the Pediatric ICU (PICU) was critical. Emmett was in severe pain which required lots of sedation and pain management.

A few days later when the doctors examined his airway they found that the damage was more severe than expected. The battery literally burned a hole through his esophagus into his trachea (airway) allowing his stomach bile to reflux into his lungs. Emmett had a stent placed but the procedure was unsuccessful. We felt so hopeless. After the failure of the stent, doctors removed two inches of Emmett’s esophagus and it was rerouted to the side of his neck, called an Esophagastomy. The other end of the esophagus that was attached to his stomach was stapled shut. His trachea was patched with nearby tissue to close off the airway leak. What was supposed to be a 2-hour surgery turned into a 9-and-a-half-hour surgery!!

Emmett had a feeding tube (G-tube) placed, necessary for 100% of his nourishment since his esophagus was temporarily non-functional. After five weeks in the PICU, Emmett was finally sent home. He required occupational, physical, speech and swallowing therapies each week.

After 5 months of being home, Emmett went back to the operating room to have his esophagus reattached. There were many concerns about reattaching the esophagus since two inches had been removed, but to all of our amazement the two ends of the esophagus joined together perfectly. Then, five days later, Emmett’s vital signs became unstable. A test revealed a large leak in his newly repaired esophagus. He was rushed back into the OR where multiple surgeons consulted on prognosis and treatment. Because this was such a rare case, physicians from out of state where contacted and together they devised a plan to repair Emmett’s throat.

We were so excited that Emmett made it home for his second birthday. We celebrated with family and dear friends, enjoying every moment that we had together as a family under one roof. Unfortunately, Emmett’s fight wasn’t over yet. Soon after his birthday he ended up back in the PICU in respiratory distress. This visit lasted about 3 weeks when we were delighted to bring our Emmett home again.

After months and months of sleepless nights, Emmett’s Pulmonologist Dr. Rao suggested we open our home to invite nursing care at night for Emmett. I broke down in tears, exhausted from so many nights awake, trying to sleep in a rocking chair, just to be near his crib. Michael and I hoped that having a home health nurse would help keep Emmett home from the hospital.

Two weeks later, Emmett went into extreme respiratory distress and was flown to PCH. His tiny fragile body seemed to be getting weaker and weaker as the days went by. He was working so hard to breathe that he couldn’t gain weight or build up a reserve for his body to thrive.

Michael and I called for a Multidisciplinary Care Conference. The verdict was to do a Tracheostomy. Our little Emmett was incapable of breathing on his own. When the trach was placed, and Emmett awoke from surgery, Michael and I instantly recognized a change in our little boy, he could BREATHE!

Emmett was sent home two weeks later right before Christmas with his new trach and a ventilator system. The ventilator gave his tired lungs and body a rest so he could finally sleep peacefully.

After the surgery, Emmett was hospital FREE for one entire year! It was a miracle. During that year Emmett learned how to walk, jump, and play. We went on a vacation and he began sleeping in his own bed. His medical care did not stop, but his life was improving. Emmett’s reconstructed esophagus continued to cause issues, requiring Emmett to undergo esophagus dilation under anesthesia every three weeks. The esophagus was not improving, and the aspiration of his own saliva was continuing to damage his lungs. Emmett’s wonderful Phoenix Children’s Hospital Team decided it was finally time for a second opinion and referred us to Cincinnati Children’s Hospital. CCH has an advanced Aerodigestive Center that studies and treats critical airway, esophagus and lung issues and diseases. Emmett was an appropriate candidate for the program. 

After two visits to Ohio and many scopes, tests, and consults with the physicians, Cincinnati decided that Emmett’s entire esophagus needed to be removed and replaced with a portion of his bowel. The surgery is unique and has only been performed 150 times over the last 30 years in pediatrics. Cincinnati was just the place to have it performed. Michael and I prayed and felt that this was the best option for Emmett’s future. The surgery date was set for December 6, 2012.

Emmett was expected to be hospitalized for four to six weeks post operation. The surgery lasted for 14 very long hours. Emmett was taken up to the Pediatric ICU at Cincinnati Children’s Hospital to recover. Emmett’s recovery was steady and he began healing at a rapid rate without infections or leakage at the surgical sights. Emmett was able to come home two days before Christmas, making his recovery time only two and a half weeks post operation. It was nothing short of a miracle.

In 2015 Emmett’s trachea needed to be repaired and once again he underwent another major surgery at Cincinnati Children’s Hospital. The button battery had burned the nerves of Emmett’s vocal cords. This resulted in a bilateral vocal cord paralysis, which meant he needed a tracheostomy to breathe. In August Emmett had his airway repaired using a graft from his rib cage known as a Larynotracheoplasty (LTP) surgery. A stent was placed in his airway to give support to the new graft that was made to hold open Emmett’s vocal cords. Emmett was sent home to Phoenix to undergo a trach capping trial. His physician wanted to see if he could breathe on his own without the assistance of the tracheostomy. To our amazement, Emmett succeeded and On December 17th, 2015, his trach was removed, and he was finally able to breathe on his own. One more miracle in our little boy’s life.