So, Virginia Grace, Gracie, began her several day process of decannulation today at Vanderbilt. This first day (today) was a bronchoscopy, during which her otolaryngologist looked down her airway to assess for viability. Tomorrow he will insert a modified tracheostomy tube which will force her to breathe through her mouth. They will monitor her for twenty-four hours, watching for signs of desaturation and labored breath. If she is able to breathe normally, the doctor will simply remove the trach and apply a dressing. They'll observe her one more night and then we'll come home. The hole should heal within a month, but if it doesn't, she'll have to have surgery to close it.
During the bronchoscopy, though, Dr. Goudy didn't like the condition of her airway, saying that it was pretty narrow (made him 'unhappy'), and that there had been some collapse of the airway above the tracheostomy tube, known as 'suprastomal tracheomalacia.' I'm guessing the collapse is in some part due to the fact that she's been trached for almost three years.
Unfortunately, this may cause her to be unable to be decannulated without another surgery called Laryngotracheal Reconstruction. In this type of surgery, the narrow areas of the glottis or subglottis are opened up, and carefully shaped pieces of the Gracie's rib cartilage are placed to widen the narrow areas. The recovery from this procedure is fairly lengthy.
Dr. Goudy said that he had seen a few patients with airway's as small as Gracie's who had done well enough to avoid further surgery, but he wasn't overly confident that she would be able to do so. There are also complicating factors, he thinks, with her lungs, which we already knew to not be in the best condition. So, there may need to be a pulmonologist pulled in to the team
I'd love to hear if any of your little ones have gone through this.
During the bronchoscopy, though, Dr. Goudy didn't like the condition of her airway, saying that it was pretty narrow (made him 'unhappy'), and that there had been some collapse of the airway above the tracheostomy tube, known as 'suprastomal tracheomalacia.' I'm guessing the collapse is in some part due to the fact that she's been trached for almost three years.
Unfortunately, this may cause her to be unable to be decannulated without another surgery called Laryngotracheal Reconstruction. In this type of surgery, the narrow areas of the glottis or subglottis are opened up, and carefully shaped pieces of the Gracie's rib cartilage are placed to widen the narrow areas. The recovery from this procedure is fairly lengthy.
Dr. Goudy said that he had seen a few patients with airway's as small as Gracie's who had done well enough to avoid further surgery, but he wasn't overly confident that she would be able to do so. There are also complicating factors, he thinks, with her lungs, which we already knew to not be in the best condition. So, there may need to be a pulmonologist pulled in to the team
I'd love to hear if any of your little ones have gone through this.
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