As mentioned in my previous entry, we needed to get Grace’s tonsils and adenoids out before we could begin to develop her upper and lower arch.  But there was one other item on the to-do list that had be addressed even before we could proceed with the surgery..

Upon arrival in Pennsylvania, we requested an ENT referral from our pediatrician.  Four weeks later we were seen by an ENT at Children’s Hospital of Philadelphia.  Grace and I walked into the appointment and were asked all the usual questions by the nurse practitioner.  When asked why we were there I replied “To have Grace’s tonsils and adenoids removed” -- at which point we were (as one might expect) subjected to another round of questions regarding her history of sore throats, ear aches, etc.which she really didn’t suffer from at the time.

When the ENT began to evaluate Grace, I presented records from Dr. Olmos in San Diego that indicated an airway deficiency.  The ENT politely glanced at the records. I wouldn’t say he studied them or even raised any additional questions pertaining to why we wanted the surgery. He examined Grace one more time and stated that maybe the adenoids needed to be removed. The tonsils? They “ looked just fine” and he was unwilling to have them removed.

I followed up again, stating that I realized she didn’t have overly large tonsils and hadn’t amassed a history that lent itself to having the surgery for  “traditional” reasons. She had a very small  upper and lower arch, her jaw was being held back, and she was grinding at night.  In order to begin treating her with appliances, I needed to open the airway.

The ENT again declined to move forward with the tonsillectomy, at which point I subtly mentioned that she was having Apneic episodes throughout the night.  He seemed a bit taken aback. He was obviously not expecting the father to know anything about Sleep Apnea. He looked me in the eye and asked

“What do you mean?”

My frustration showing, I replied “Grace stops breathing at night, at intervals all night -- and I had hoped to not have to subject her to a sleep study at such a tender age, but at this point it appears to be the only way I’m going to be able to get her tonsils and adenoids out.” 

I understand his surprise. I understand that I’m the exception to the rule when it comes to parents knowing anything about Obstructive Sleep Apnea and sleep Disorders. I understand that healthcare professionals have the absolute best intentions...so I don’t fault the ENT for not going along with my initial request. However, as soon as I provided a CBCT scan (3D images) of her airway (not to mention all the other digital records) I would have hoped that he would have acknowledged the fact that this wasn’t just a routine appointment. 

Lesson learned by me. This was the first time I had felt the need to really advocate for treatment. The health of my daughter and her future were in my hands. I felt the need to push against the clinical requirement of a sleep study prior to treatment.  In the end, a sleep study was ordered.