After agonizing over the oxygen situation, Mikki and I decided that there’s no practical way to take Luke off the oxygen while having it readily available for him during an apnea episode. So he’ll stay on it until he stops having apnea episodes or a specialist who knows him well recommends weaning.
That being said, Luke has had several crying fits in the past few days, but seems to have learned to collect himself before they progress to apnea episodes. Good for our little guy!
Luke’s throat lacks the strength and coordination to swallow properly, and his sucking muscles are very weak. This combination of weakness creates a Bermuda line segment of sorts which makes bottle feeding particularly hazardous. Because Luke’s throat does not function properly, there exists the possibility that he could aspirate any liquid traveling down his throat.
In order to avoid aspiration, we add thickener to Luke’s formula so it travels more slowly down his throat so he has time to swallow. The thickened formula requires Luke to work harder to suck, thus exhausting him before he can finish his bottle. Whatever formula he doesn’t finish by bottle, we feed him with the pump through the “g-tube” in his stomach.
When feeding Luke, I have a “three strikes” rule. If he coughs or chokes three times, I stop the bottle feeding. Each time he chokes, the danger increases that he may aspirate his formula, which could cause “aspiration pneumonia”.
Additionally, every time Luke chokes or cries, it weakens his throat muscles which results in his breathing to take on a wheezing or hoarse rough/gravel sound. Luke usually recovers from the wheezing by the next day.
Finally, in addition to all the others, Luke has acid-reflux, which often manifests itself in spitting up, which can also result in aspiration pneumonia if he chokes on his own vomit. Feeding him makes my soul very unsettled, but it’s something with which I will eventually become more comfortable and will not panic so easily.