Sunday, June 19, 2011

Sometimes I Love Living in a Small Town

Every boy needs a dog.

I ran into our pediatrician at the grocery store tonight (I also ran into three other families we know). Living in a small town can be wonderful sometimes - our pediatrician stopped by to see how Nolan was doing and to tell me that they faxed the letter off to the insurance company. She thinks we're doing the right thing by requesting a second opinion with a geneticist (and for putting off the fundoplication until we have proof that it is absolutely necessary).

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)?
If the sleep neuro believes that a C-Pap (or BiPap) is a viable method for controlling the apnea, then we will likely be referred to a pulmonologist for more sleep studies and C-Pap titration. C-Pap isn't without its own set of issues (pressure on a growing face, a real issue for a kiddo like Nolan who has midface hypoplasia), but they are much less of a concern than the issues that come along with a fundoplication. Plus, if the C-Pap doesn't work (or he outgrows the need for it), it is entirely reversible. A Nissen Fundoplication is not.

We'll see what the sleep neurologist thinks on Tuesday.


Mommy said...

So, do you think you'll be able to pass the mcat and become a dr in a couple more years? You have to keep tabs on and learn so much I think my head would explode. Hope all goes through and Nolan can avoid the big surgery. Outgrowing it would be great.

Herding Grasshoppers said...


I so admire all the research, thought, and effort you put into taking care of your kids' needs. You're doing an awesome job!


TheSweetOne said...

you go girl! I love the idea of increasing motility first to see what happens! We were able to take Lauren off her antacids once her motility issues were taken care of (and diet change helped too) for which I am eternally grateful. Super thankful that your pediatrician is on board and sounds pretty proactive on Nolan`s behalf. Hooray for small towns indeed! : )