We were back at Children's Hospital yesterday for an appointment with our GI specialist. This time we did a lot of talking (two hours worth) and now we have a firm handle on what our plan is to help Handsome. Still no answers, but at least we have a plan.
First I will meet with a pediatric otolaryngologist (a really specialized ENT doctor) to discuss the scoping of Handsome's airway to check for structural abnormalities. We don't think this is a problem, but we need to cover this base just in case.
Next we will be scheduled at the hospital for all the testing to take place at once under anesthesia. He will be scoped (a camera) by the otolaryngologist. Then a GI surgeon will do an endoscopy (a different kind of camera) down his esophagus and into his tummy--checking for inflammation, thickening, and other abnormalities. The GI surgeon also will take some biopsies (teeny tiny ones--as small as a pinhead) of Handsome's tummy.
He'll also place a pH probe down Handsome's nose and into his esophagus. Handsome will wear this probe for 24 hours (and be attached to a small portable computer) while it records his reflux incidents. Typically the probe is placed fairly far down the esophagus, but with Handsome it will be put much higher up because with him the really big concern is how often the reflux is coming up to the point where he can aspirate it into his lungs.
Finally he'll have a 40 minute MRI without contrast done of his brain. This will be done to (hopefully!) rule out the possibility of Chiari Malformation.
After all of this (which will be about 3 hours under anesthesia), Handsome and I will stay in the hospital for 24 hours while the pH probe is taking place. Mainly we'll be there in case he pulls the probe out--other than that, there really isn't a medical reason for us to be in the hospital.
All of this should be completed in the next four weeks, hopefully less. They're moving him up the MRI list quite a bit because of the possibility of Chiari. Getting all of this testing done will, we hope, give us a direction to go in with Handsome's treatment. There are a lot of possibilities for what is going on with him. Chiari (especially in light of his swallowing problems) is a possibility. It's also possible that he has a severe allergy to something he's eating and his body is trying to get rid of it--we'll be able to tell that via the biopsies and by the endoscopy.
Another possibility is fundoplication surgery. This is when part of the upper part of the stomach is wrapped around the lower part of the esophagus--it tightens up the end of the esophagus so that food can still get through, but reflux can't come up.
So, there is a LOT going on here. Even though I don't have answers yet, I do like having a plan in place.