Paige did not have any pain post-op. The movies (she chose Wicked 1&2), Gatorade and DoorDash Chick-fil-A certainly helped her spirits. 
She had some bleeding (as expected) and that calmed significantly by 18 hours post-op 
The congestion was/has been the hardest part bc she was directed not to blow her nose for a week after surgery. We did have to cheat a bit and do soft blows to help clear the residual blobs after our multiple nasal rinses/day. 
She is on an antibiotic as well as ear drops to treat the bacteria and staph that came back on the cultures. 
Overall she has been herself - doing all things she loves - puzzles, games, coloring, walks, bike rides, chores, and eating. 
Thankful for a generally easy recovery. 
Her sleep has been the most difficult part because she is having to mouth breathe (which she does not usually do), and her cpap mask only covers/supports through her nose. 
Since it is inflamed, congested, scabbing and healing, the machine has been using her max pressure (13 is the highest end of her range in her programming) which is uncomfortable for her… and based on the download it’s only helping minimally as her AHI has been 6 and 9 the past couple nights… 
I’m considering trying a full face mask to see if that brings relief. 

The major finding during the procedure indicates her lingual tonsils (yes these are a different set tonsils from the regular tonsils - located at the back of the throat) are blocking 75-90% other airway.  😳 
This means we need a second surgery and soon. 
July 24th is her follow up for this sinus surgery. If all is healed,  we will discuss surgery dates for the lingual tonsillectomy then. 
Dr. Knollman said that in his 10 years of experience, and he works a great deal with patients with DS (he’s from Carmel and also has a brother with DS ❤️), that the lingual tonsillectomy resolves asleep apnea in 70% of patients and the other 30% there are other underlying reasons for the apnea… 
So the course is 
1) surgery 
2) heal 
3) follow up sleep study after healing  
4) if sleep shows apnea, then the option to be put under for another DISE to determine the root cause of the apnea (could be flappy airway, could be the tongue - which is due to the hypoglossal nerve not stimulating it to stay when it should and not block the airway, other possibilities just naming a couple) 

 I have so many thoughts/questions… 
How long have they been this large? (No way to know but I’m sure the recurrent infections have been a major cause for this.) This was not picked up on the airway scans/X-rays done with our orthodontists who have done the expansions… 

Dr. Knollman was surprised her cpap could work effectively with this degree of blockage. Her cpap downloads have shown really good numbers every month for 6 years… 
For reference, she’s on a cpap that is set to a range based on her titration sleep study. Her range is 6-13 — in her stats it shows her median average is 8. And her AHI (apnea hypopnea index is 1.2 on average - even lower some months).
The goal is under 2. 
So she has been well treated with the cpap based on these numbers. But HOW is she registering 97-99 O2 during the day if she has 75-90% blockage? 
Pulse oximeters measure the oxygen saturation of the blood, not how hard someone has to work to breathe. As long as enough air is getting through and her lungs are functioning well, oxygen saturation can remain completely normal, even if her airway is narrower than it should be. The body can compensate remarkably well when awake. BUT this emphasizes the fact that she’s exhausted and not able to put energy into many other things (attention/focus, speech, swallow, behavior/regulation) bc she’s working so hard just to breathe.
While this may not be the only factor (never seems to be just one thing, that would be too easy), this certainly has potential to be a major factor for why she’s has years of challenges with being stuck in fight or flight more often than not, trouble regulating, trouble with stamina, endurance, fatigue (she has not gotten faster nor been able to run farther without stopping and runs/hikes have not gotten easier even with all the work we put in…), inability to create a new blueprint for resting her tongue, having a closed mouth posture, swallowing (again we have done years of myofunctional work and cranial nerve work)… her body has been protecting itself… when you aren’t getting sufficient oxygen, you get the bare minimum, you’re just trying to stay alive. 
And then I think, wow, she’s friggin’ amazing what all she’s doing with this level of obstruction.  No wonder she’s tired. 
At this point, we’d like to continue to focus prayers on the sinuses fully healing and restoring her ability to breathe through her nose. And with this, we hope her sleep can improve. We pray that this upcoming surgery will result in major improvements related to fully opening her airway, and I’ll be bold and ask for it to fully resolve her sleep apnea and give her restorative sleep and access to the oxygen she needs to function optimally and grow. 
Thank you for your ongoing prayers and support! ♥️