Impedance Probe Results Are In

We got the call from Cincinnati yesterday with the impedance probe test details I requested. While her acid levels were normal and there was no outward evidence of reflux (pain or discomfort, spit-up, vomiting etc.) the probe measured that there was 157 episodes of reflux during the 18 hour test. 39 times the stomach contents made it up to the upper part of the esophagus or maybe even the airway. 85% of the time it correlated with coughing. Probably another 5-10% of the time I couldn't record the coughing quick enough on the machine. So basically the coughing and the reflux happen together almost all of the time. Which is pretty much what I've been saying all along.

After discussing it at length with friends on the trach forum and with Steve after dinner we've come to some conclusions about what this information might tell us and where we go from here.

Here's the question: Are the secretions irritating her and causing her to cough, causing the pressure in the stomach to force up the food, IE. reflux? Or, is she coughing because reflux is irritating her, and then as a result she coughs up secretions. It's the chicken or the egg thing. Why does it matter? Because it would really help to know what is causing the problem to help decide how to treat it. But unfortunately there isn't really any way to know. Steve and I agree we think it's most likely that the coughing is the real problem. Steve's logic is that if the reflux was causing the coughing there would be more incidents of reflux happening that didn't trigger a cough. Makes sense to me. I've requested the full data from the test so I can analyze it closer but it will take 4-6 weeks to arrive.

The other thing is her esophagus looks beautiful. There is no damage at all to it from the reflux so one might question why if the reflux is causing the airway swelling there are no signs of damage to the esophagus. That's a damn good question. And since there is no damage to the esophagus there is no reason to treat the reflux with anything more than the reflux medicine (Prevacid Solutab 15mg 1x day) that she's already on UNLESS we are hoping it will resolve her airway problem.

The gastroenterologist recommends doing nothing and hoping she outgrows it. But IF we are eagerly pursuing decannulation then he says she should get a nissen fundoplication or she may aspirate stomach content. They would make an incision and wrap part of the stomach around the esophagus to keep the stomach contents from going up the esophagus. Here's a link to more info about this surgery: http://en.wikipedia.org/wiki/Nissen_fundoplication Ainsley has a small hiatal hernia http://en.wikipedia.org/wiki/Hiatus_hernia in addition to the reflux which I believe was also caused by all the coughing which in turn makes it more likely that she would reflux. There are the obvious surgical risks, but also there can be problems associated with them such as reduced stomach capacity, retching, gastric dumping syndrome, or failure (it comes loose and the surgery has to be repeated). So that is why he is not recommending she get one.

The airway clinic thinks it may be the answer to her problems but doesn't know for sure and also cautions that there can be undesirable side effects.

Where does this leave us? Uncertain since the surgery may or may not fix the airway swelling. We've decided to try a few other things before surgery. We're going to try giving her some over the counter pain medicine and allergy (even though she doesn't have allergies) meds to see if it can reduce the amount of coughing and secretions she has. My theory is that she coughs because her airway is uncomfortable like when you have cold and have been coughing a lot. Her vocal cords are touching because of the swelling which makes them susceptible to irritation from everything from coughing, vocalizing, aspiration etc. The more she coughs the more irritated they are and the more secretions the swollen tissue creates. So long as the cords are touching they are highly vulnerable to irritation. This causes a viscous cycle. The hope is the meds might help break the cycle. This is all just my theory and may not work at all.

So our other thought is this: We've had pretty good success on the pureed diet. The vomiting virtually stopped. So if the meds don't work we will thicken her tube feedings even more in the hope that will help keep it in the stomach. We'll have to administer it via syringe instead of gravity because it'll be too thick otherwise. And we are also going to try to eliminate the night time continuous drip feedings so she's not getting thin liquids while laying down. But the doctors are NOT recommending that. They say it usually helps to go with a continuous drip day and night. We tried that when she was a baby and it actually seemed worse. Perhaps because there was always something in the stomach to be vomited out. It will be tricky to make sure she gets enough calories during the day but got her calorie, fat, protein, water needs from the dietitian today. Since there is no outward evidence of reflux the only way we'll know if this is helping is if we start to hear more sounds from Ainsley because as the swelling decreases it will allow more air through the vocal cords and therefore we'll hear more sound.

If neither of those things work then we'll probably be looking for the best surgeon to perform the surgery here in Seattle.