A 5-year-old tracheostomy-dependent patient presents to pediatric otolaryngology for follow-up. The patient was born at 32 weeks gestation, and has a complex medical history that includes chronic lung disease, pulmonary hypertension, respiratory failure, achondroplasia and an autism diagnosis. What factors should be considered in a decision to progress to decannulation?
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“A lot of times, when we’re trying to decide if somebody is ready to have a tracheostomy tube removed, there are a couple of steps,” says Brandon Hopkins, MD, pediatric otolaryngologist with Cleveland Clinic Children’s. “First, we ensure that they don’t need a ventilator. Second, we look for obstruction in their upper airway. A sleep study can help us do that. In this patient’s case, the sleep study was performed with his tracheostomy occluded. It showed that he had three events per hour, which is in the mild range for sleep apnea.”
A complex medical history
“Our airway team has managed this patient’s care since his infancy. When I became involved with this patient’s care, he had a history of chronic lung disease, pulmonary hypertension and respiratory failure. He had been on the ventilator since birth, and our pulmonary team felt he was ready to be weaned to breathing on his own. Our anticipation was that as soon as he was off the ventilator we would start being aggressive with decannulation, but we weren’t sure what would necessary to get that accomplished,” states Dr. Hopkins.
“[The patient] kept fighting and beating the odds every step of the way,” says Annie Banas, CNP, aerodigestive clinic coordinator in Cleveland Clinic Children’s Pediatric Center for Airway, Voice and Swallowing Disorders (PCAVS).
“He had been through so much – I just wanted to try to remove impediments in his life so he could run, play and even jump in a pool,” says Dr. Hopkins. “We knew there was some airway obstruction, and when we took him into the OR for airway evaluation when he was four years-old, we were debating whether mandible distraction would be required. However, he was easily exposed. His airway was open – his trachea had no stenosis so there was no need for airway reconstruction. It looked like his nasal obstruction was mostly due to his enlarged adenoids. We performed a tonsillectomy and adenoidectomy at that time.”
Decannulation was performed about a year later, and the patient is doing well.
Optimal follow-up for a tracheostomy is still being debated, with everyone handling it a little differently. For Dr. Hopkins, the question is: Are you actively trying to decannulate a patient or not? Some children (e.g., with myasthenia gravis, cerebral palsy or other issues) may never come off the ventilator. In these cases, follow-up is more of a maintenance issue. Are there complications with the tracheostomy tube? Is there granulation? If an emergency were to occur, would intubation be possible from above, without using the tracheostomy site? Airway patency should be confirmed every 1-2 years. This can be done using an office-based lower airway endoscopy, which may help avoid an operative trip.
In patients for whom decannulation is the ultimate goal, operative airway evaluation is conducted at least annually, according to Dr. Hopkins. “A lot of times, we take a multidisciplinary, triple scope approach that combines the pulmonary and gastrointestinal (GI) teams to evaluate the patient’s airway and upper GI tract together. We ask ourselves: Do we think the patient’s lungs are ready? Is there any area of obstruction? Has this patient had eosinophilic esophagitis or another issue that might preclude decannulation?”
Patients like this with multiple, complex medical conditions may spend many days each month visiting different specialists. In order to ease the burden on patients and their families, Cleveland Clinic Children’s opened PCAVS. An aerodigestive program offering integrated team assessment and care from multiple medical and surgical specialists for infants, children and adolescents, PCAVS serves as a home-base of sorts, according to Dr. Hopkins. Patients can often be seen at a single location during one half-day visit. A sequence of visits is tailored for each child, who typically spends 30 minutes with each specialist, which may include consults with pulmonology, GI and pediatric otolaryngology. Physical medicine and rehabilitation are involved to manage the patients’ functional needs (i.e., wheelchairs and braces, extremity Botox, drooling, etc.). The team also includes speech language pathology, pediatric palliative care, a dietician, social work and a pharmacist as needed.
Not all PCAVS patients are tracheostomy dependent, but they all have aerodigestive issues, such as an upper airway obstruction, hypoventilation, chronic lung disease, or any medical issue that involves more than one or two of these providers. The team also works in coordination with a patient’s primary care physician.
During a PCAVS visit, in-office diagnostic procedures and periodic endoscopic airway assessments can be performed. If additional problems are discovered, they can be addressed at the same visit. Should surgical intervention be required, we often combine a multi-team approach to perform several procedures simultaneously thus limiting exposure to anesthesia.
“We meet to review the patient’s case beforehand, and discuss our findings together after the patient leaves. We develop a unified treatment plan with the family for managing a patient’s complex, aerodigestive issues. Our care coordinators try to facilitate other aspects of a patient’s care, whether that’s coordinating with cardiology, neurology, or other members of that complex care teams that comprise Cleveland Clinic Children’s,” states Dr. Hopkins.