Our euphoria with the G-tube at home lasted approximately a day and a half after our hospital discharge. The good news: it’s still so easy feeding Andrew! Just put the formula through the tube and then done! The bad news: No matter what the rate or volume of feed through his new Kangaroo Joey Feeding Pump, Andrew is miserable, gassy, and needs to be vented constantly. The food basically comes back out whenever we vent him. For a while, we had reasonable success feeding him via gravity feeds using a syringe, bolus-style. But while he could tolerate 4 ounces of formula at first, he became increasingly less tolerant. It went down to 3 ounces, then 2 ounces. And now he can only drink 1 ounce at a time without vomiting it all up almost immediately. He also spends most of the day chewing on something, swallowing more air, constantly refluxing, and occasionally gagging. Lovely. So he has lost two pounds since he’s had his g-tube placed and is back down to a whopping 18 pounds. Our GI doctor and the surgeon are obviously concerned. But I think it’s clear they have no idea what’s going on, exactly. Andrew’s been drinking 3-5 ounces total the past couple of days. We were hoping he’d have a minimum of 30 ounces after the surgery. I think it’s just a weird cerebral palsy-related neurological thing and, hopefully, the food intolerance will pass.
And, of course, another night in the hospital. This time, for an overnight EEG to see what was going on with Andrew’s seizures. Basically, whereas we couldn’t see his seizures before, we can definitely see them now. And, apparently, Andrew is having seizures all day long. They may look pretty benign but are rather sinister: he tenses a bit, looks up , and gazes to the right or left. When most people watch him, they think he is being curious and adorable. I don’t usually share that they’re seizures. The other seizure type he has is that he looks as if he’s completely zoned out and it’s difficult to get his attention. So, for now, he will continue with a medication called Zonegran/zonisamide. We’re just going to add a fairly new drug called Banzel/rufinamide to his daily cocktail of drugs. Banzel is a fairly new FDA-approved drug for the treatment of Lennox Gastaut Syndrome. Seizures, at their worst, have a way of stealing the essence of a person. For Andrew, it means he is often in his own world and unable to come out of it easily, unable to smile, unable to respond to external stimuli.
Adding to Andrew’s thrilling week, we took him to his first dentist appointment today. Unlike his twin, Eleanor, who has lovely pearly whites, Andrew’s teeth have always been tiny, chipped, yellow, and stained. The weak teeth situation is likely a result of his prematurity, poor nourishment from not eating in the NICU for four months, and the countless number of medications he has been on. Fortunately, there are no cavities. We are to return in six months, however, when all his baby teeth are in. At that point, Andrew will likely be sedated, taken to the OR, and have his teeth all restored and covered with a protective enamel of some sort.
But between his feeding and neurological woes, Andrew has been a bit listless, sad, and rarely cracks a smile anymore. The poor guy just looks exhausted :(. Hopefully, our next update will be a more positive one.