The sight of the empty spare room in their suburban Chicago home thrills Jason and Jennifer.
That’s because for three years, the room had been filled with oxygen tanks and other medical equipment needed for their son Jakob.
In September, a medical supply company toted away the equipment because Jakob can now breathe fine without it, following a life-changing surgery at Ann & Robert H. Lurie Children’s Hospital of Chicago.
Soon after he was born, Jakob was diagnosed with chronic lung disease and endured a stroke and brain bleeding, among other issues. Jakob, born in an Indiana hospital, was sent home to Illinois in an ambulance to Lurie Children’s followed by Jennifer and Jason, who adopted him. There, Tord Alden, MD, a neurosurgeon and associate professor of neurosurgery at Northwestern University Feinberg School of Medicine, implanted an Ommaya reservoir device to decrease the fluid on his brain.
Jakob stayed at Lurie Children’s for a month for monitoring and then spent several more months in a transitional care facility near his home. Finally, in November 2016, more than six months after he was born, he could go home with his parents, a tracheostomy tube in his neck helping him breathe.
“We did whatever we had to do for our son,” said Jennifer.
The new parents got to know their little boy, while continuing to visit Lurie Children’s occasionally to see Jennifer Lavin, MD, an otolaryngologist at the hospital and assistant professor of otolaryngology at the Northwestern Feinberg School of Medicine.
When Jakob was almost two, Dr. Lavin told the family the baby’s airway was beginning to collapse. Jakob would need laryngotracheal reconstruction surgery to enlarge and strengthen his airway so he could breathe easily. She referred the family to the Aerodigestive Program at Lurie Children’s.
The Aerodigestive surgeons at Lurie Children’s perform the most airway reconstructions in the state of Illinois, and among the most of any pediatric institution in the United States. In addition to Jonathan Ida, MD, FACS, Medical Director of the Aerodigestive Program, other members of the Aerodigestive surgical team include Dana M. Thompson, MD, MS, FACS, Head of the Division of Otolaryngology; Jennifer Lavin, MD, Director of Tracheostomy Program; James W. Schroeder, MD, FACS, Director of Pediatric Fiberoptic Endoscopic Evaluation of Swallowing (FEES) Program; and Taher Valika, MD.
The Aerodigestive Program also includes a multidisciplinary team of experts to serve children like Jakob who have complex airway, pulmonary, upper digestive, sleep and/or swallowing disorders. Alex Green, DO, Attending Physician in the Division of Gastroenterology, Hepatology and Nutrition, leads the gastroenterology portion of the program, and Sarah Zack, MD, leads pulmonary. Sarah Neault, APN, is the Aerodigestive Program Nurse Practitioner, and Ashley Green, Aerodigestive Program Coordinator, ensures each patient’s visits are well organized. This unique setup allows for families to meet all pertinent teams in one clinical setting.
“We met the entire aerodigestive team and felt comfortable with their confidence on the next steps,” said Jennifer. “I also did a lot of reading online about Dr. Ida. Everything I read made me feel more comfortable with him taking care of my son in surgery.”
In a typical airway reconstruction surgery, a surgeon uses a portion of a patient’s rib cartilage and sews it on to the airway to expand it, often making it easier for a child to breathe. Physicians can perform bronchoscopies that allow them to view the airways and inside of the lungs to determine whether a reconstruction procedure is necessary. Jakob had many bronchoscopies before his surgery to ensure the Aerodigestive surgery team would provide the best and most appropriate are possible.
When the day of surgery arrived, Dr. Ida discovered that Jakob’s airway unexpectedly looked better than it did at his most recent bronchoscopy. The Aerodigestive surgical team would need to change course for the procedure, removing scarring inside of Jakob’s windpipe rather than removing a segment of it. After that, Dr. Ida closed Jakob’s airway using rib cartilage.
“After calling us into the consultation room, they asked if they had our permission to try a unique procedure,” Jennifer said. “After hearing their detailed explanation, we agreed. It was a success!”
Dr. Ida chose to perform the least invasive of the surgical options for Jakob, allowing the toddler to be decannulated, or get his tracheostomy tube removed, and return to his favorite activities at home with his parents as soon as possible.
The little boy couldn’t move his neck for more than a week after surgery, remaining under sedation so he could properly heal. While coming out of the sedation was difficult, Jakob recovered well. He went home 11 days earlier than anticipated and returned to his early childhood education school two weeks later.
“He has been amazing,” said Jennifer. “He is doing very well. The team said he has no restrictions.”
Jennifer said it’s been a joy watching her son learn to speak and enjoy food and drink without the tracheostomy tube. He loves puzzles, Legos and PAW Patrol – Jennifer said he mistook the cartoon dogs’ collars for tracheostomy tubes, further endearing him to the animated series.
Jakob will continue to be monitored by Dr. Ida and endure speech and physical therapy at Lurie Children’s, but the outpatient appointments don’t bother Jennifer and Jason, who know their son is home for good, and breathing on his own.
“There are good days and bad days, but it feels really good to be moving forward,” Jennifer said. “We have a lot to look forward to.”