Surgery #9 ✅ 

 

John’s surgery went great and he’s resting in PICU for (at least) the night. He has to have stents in his nose for 7 days and his tolerance of those and ability to breathe will dictate how long he stays in the ICU/hospital. 

 

John has had many surgeries, but all of them up until now have been endoscopic. Today, he had an open septoplasty which means they cut at the bottom of his nose and actually peeled things back to look inside with their own eyes. He’s also had a recent CT scan, but because of his size and limitations of the scan, some things were not very well visualized on that either. 

 

One of the 2 main issues the doctor set out to fix today was his blockage on the right side of his nose. The CT scan showed that (what we thought was) his septum was completely blocking that nostril. Turns out, the blockage was actually bone and not his septum. He has had rather aggressive regrowth of bone from the bottom and side of his airway. They were able to drill out a good bit of this bone to open it up much more. In terms of healing, this may actually be better since bone regrowth (if it occurs) isn’t generally as rapid as tissue regrowth. Also, the doctor said it is possible this excess bone has always been present, but because of all the other things we just hadn’t really visualized it yet. When his mouth/nose/jaw didn’t split all the way, it can cause bone thickening in the middle parts of the face. This is very common with PAS which is why he said this bone growth may have been how he was born. 

 

The second issue they went to fix was his piriform aperture. This has been “fixed” once when he was just a few weeks old. The CT scan showed that this gap (where air flows) was still small, but when they got in to look the opening was actually smaller than it looked on the CT. His was just 6mm across when he was born (3mm each nostril). 

Before today, it was 10mm across (5mm each nostril), and it’s now been corrected to 20mm across. He was able to pass the “adult size” version of a medical tube (the name escapes me 😂)… which tells us things are wide open in that part. 

 

There is still scar tissue and some that had created a “webbing” was was also cleaned up. 

 

The hole he had in his septum which we thought closed up is still there. In reality, the doctor said that in his case the “therapeutic hole” may actually be helping for his breathing.

He was in an immense amount of pain after surgery, as they removed a ton of bone. He has a large amount of swelling and some bruising, so much so that he almost doesn’t look like himself. 🥹 we will be keeping pictures of his face to ourselves for now, so instead enjoy his chubby baby feet! 

Our goal for tonight is to get him some food, some rest, and keep him comfortable. Well will continue to update. Thanks for reading. 🫶🏼