She did confirm that it is not a minor surgery, but a rather major procedure. And that it is generally only performed for children who have life-threatening reflux and require a feeding tube. Since we're concerned about motility, there is the possibility of adding pro-motility agents to Nolan's medication regime prior to embarking on a permanent surgical procedure that has significant side effects.
Since the apnea is the biggest issue with Nolan's reflux (potential damage to his vocal cords is another problem with the airway reflux), it is not unreasonable to attempt a C-Pap or BiPap (as his muscle tone allows) to try and correct the apnea. In a nutshell, let's try some less invasive and less risky interventions before proceeding with a major, irreversible procedure. A basic principal: First Do No Harm.
The letter is with the insurance company and hopefully the approval to see Cleveland Clinic genetics will come through post-haste.
We see the sleep neurologist on Tuesday and I have a few questions for him, including:
- Is the apnea likely to be caused by the reflux, or is it more likely to be caused by a physical obstruction/low muscle tone/recurrent laryngomalacia?
- Is a C-Pap absolutely contraindicated for kids with silent reflux?
- How likely is Nolan to grow out of the apnea issues (since his airway will increase in size as he grows)?
We'll see what the sleep neurologist thinks on Tuesday.