We have a sinus surgery date in Cinci - 6/22- please keep her in your prayers prior to, on the date (it’s a 2-3 hr surgery) and during post opp

It is outpatient but since we are from out of town they were happy to offer to keep her overnight for observation- if she’s doing exceptionally well we are welcome to forgo staying the night and go home. 

Sinus surgery will include addressing the openings of the maxillary and ethmoid sinuses, obtain cultures, and irrigate the maxillary sinuses, revision adenoidectomy, and nasal turbinate reduction (reduce the size of the swollen turbinates to provide more space for nasal airflow and improve congestion).

Additionally I requested a bronchoscopy and a DISE (drug induced sleep endoscopy).

The bronchoscopy because she has been coughing up phlegm post 4 weeks illness for about 5 more weeks… drs think this is all post nasal drip related and over responsive immune system (which we have had for years, this is part of why we are headed to appt with Infectious Disease dr next week), but I wanted to make sure nothing is in the lungs. 

The DISE, I have wanted to do for quite some time but not wanted to put her under solely for this. I was ok with her just counting to use the cpap since she doesn’t mind it. But this will give us answers as to the root cause of her apnea (likely the tongue which is not being triggered by the nerve like it should be - but we will see). He will then be able to tell me if she’s a candidate for the hypoglossal nerve stimulator. 

Nothing I have wanted to consider really - bc she does well with cpap (we worked really freaking hard, lots of lost sleep, for about 6 months when she was 5.5 to be successful with it) and I am not ever one to get excited about implanting something in my child… 

BUT we have not made the advancements in upper jaw that we need (we need 5-6mm more) — and I believe much of that is due to wearing a cpap every night. I vividly remember listening to Dr. Binemam from CO speak at the first OPTIONS conference in AR when Paige was 2 years old. “Avoid cpap” was what I heard and this is exactly why… it’s next to impossible to grow the midface while using the cpap. 

Unfortunately, she had severe sleep apnea… T&A surgery (at age 2) reduced it to mild for a year or so then it came back and was sever again. I had no choice, she needed oxygen for her organs and needed to Breathe and get good quality sleep. But it feels as though with all I’ve done with ortho providers, we fell short in getting the growth forward that we need (width was very good). 

I do HOPE that with this infection getting cleared out, she may finally be able to breathe and her body will have a BREAK from the chronic infection - it may have the energy it needs to do any number things it has been simply “too tired” to do previously. Growing being one of them. 

I would venture to say this may be the first time in her life she will have CLEAR sinuses. 

The question is… WHAT is in there (we have done MARCON testing so we know that’s a piece of it) and how do we keep it from coming back!? 

We will start working with Immunology and see where this takes/leads us. 

Another area I am working hard to figure out our next steps with is her airway. 

As mentioned earlier I wanted to avoid CPAP as it works against our kids and our efforts to grow the midface which they so desperately need help growing. I was adamant we would avoid that… but with severe sleep apnea… 

After T&A surgery at age 2.5 the apnea was mild but came back and was severe a couple years later. 

I had no choice bc she needed that pressure to allow her the oxygen her organs needed and allow her quality sleep (which I don’t have to explain to everyone why that is so important). 

But I do have to believe that cpap is a contributing factor to why we are where we are today. That pressure on the midface for 10 hrs every night did not help our efforts in this regard. 

So now we are at age 12 being told by a local provider who works with complex cases, truly understands the needs here… that my concerns are absolutely valid and we have to get this upper jaw forward and out of her airway… 

that MARPE and headgear are really the only option here given her age and how much forward movement she needs (5-6mm)  

This provider isn’t wiling to take her - she only has 2-3 years left of practicing, then transitioning to teaching phase and that she wants someone who does MARPE all day every day with clients to be the one to take Paige’s case. If MARPE doesn’t work it would then mean MMA. 

To say I am sad and discouraged is an understatement. We have done so much already — it was has been hard. And she’s better for it - she’s grown in many ways - we both have. But I’m ready for her to be DONE, to get to have less going on… especially in her mouth. Not another thing to prep for and be scared/nervous about. 

Paige has already been through so much - she’s a freaking badass. 

But when will she be able to breathe, have a mature swallow and just BE. 
As always, thank you for following the journey and loving our girl.