Today’s surgery went just like we planned and we’re leaving with a newly revised circumcision, dilated upper airway, and some clarity regarding our treatment plan. 

The ENT doctor dilated his nose to assess the condition and it remains unchanged since our last visual in January. We’re thankful things haven’t worsened but the condition of his upper airway is still extremely troublesome. 

His anterior septum is gone, but the plastic surgeon was pleased that his nasal structure has remained intact without it. The plan was once to repair that part with cadaver cartilage which we can hold off on for now. 
His posterior septum is very thickened with both scar tissue and bone, and deviated so far to one side that it completely closed off that half of his nose. This can be fixed, but the plastic surgeon believes it’s best to hold off on reconstruction at this point, which is a decision we agree with. 
It’s hard to quantify the success of this procedure at this time, and it’s also possible it worsens in response to the surgery, at which point a trach would be necessary. Since he’s eating, sleeping, gaining weight; and overall a happy kid that’s not a gamble we’re willing to take unless we have to. 

A nasal reconstruction is inevitable but the prognosis and recovery is more positive the older and bigger he gets. 


Our silver linings:
John has been sick since September. We’ve had more sick days than healthy days and we have STILL remained out of the hospital, off oxygen, and been able to refrain from using his G tube. We see GI in a few months but it’s likely we will be able to remove his G tube soon!!!! 

His days aren’t easy, and his compromised airway complicates life for him, but we’re so thankful things aren’t worsening and we can hopefully avoid any major surgeries at this time. 

Our boy is a fighter and has been through more than any kid should ever have to endure, but we’re so thankful to be his biggest cheerleaders. 🫶🏼