to NG or not to NG

well the GI consult turned out to be a bit of a bust, in that they didn't seem to have all the right information, they had nothing to offer when it came to the whole reason we called them in the first place, and that "the team" (CTU, cardiology, dietitian - all the people who know Ford well) are going to ignore GI's recommendations anyway.

to elaborate - though the fellow (aforementioned "Joe", actually named Dr. Hassan) was a very nice and thorough chap, the attending, Dr. Schreiber, was a blunt guy with poor listening skills. he came and said that Ford was not gaining weight appropriately - first inaccurate statement. born in the 90th percentile for size, Ford understandably lost weight and stopped growing for awhile after his norwood, putting him way down in the 5th percentile. but since the end of august, he has been climbing back up and currently sits in the 20th. Parveen, dietitian extraordinaire, is well pleased with such progress.

Dr. Schreiber also said we needed to boost the calories in his feeds and waved a dismissive hand at the feeding pump, like no one had thought of that yet. we had. the concotion F-bomb gets (see previous post for your make at home recipe) is actually quite maxed for caloric content, so did he not read that part of the chart? he then concluded that Ford must be kept on NJ feeds for a couple months before we even try NG again so that he can catch up in weight and size.

we said "ooooookay, but what do you have to say about his incessant dry heaving?". "there could be a hundred reasons why he's gagging all the time". that was it. that was the insight we were waiting for! that there could be a hundred reasons and he wasn't going to bother to find out which one it is.

Reed, our friendly med student, said that Schreiber did have one good point, that we shouldn't put transitioning to NG feeds over Ford gaining weight. but at this point, with 2 very brief attempts at NG feeds, there's no evidence to suggest he won't gain well on NG. we'd have to give it a try to find that out, and so far, the stars have not aligned for a fair go at it.

not that we couldn't go home on NJ feeds, but there are some definite draw backs to it. NJ feeds have to be continuous, as in 24 hours a day. Ford would never been "unplugged" from the feeding pump. also, if the tube is accidentally pulled out, all the way, or even a little, we can't fix it - we have to come to the hospital for it to be done under flouroscopy. and with his little hands getting better at grabbing things around him, it's likely he'll yank that tube out of his nose often enough.

with an NG we can be taught how to put it back in ourselves and it's easy to check the placement. Ford hates it and it would be a hard 5 minutes putting one in, but at least we could do it at home. and with NG you can have bolus feeds - 1 hour on the pump, 2 hours off kind of thing.

like any baby with food in its belly, Ford is likely to spit up sometimes with NG feeds, thus losing precious calories, which is part of the pro-NJ argument - with NJ, no spitting up, no loss of calories.

you follow?

so GI says don't bother trying NG, it's a waste of time that could be spent on the smooth ride to chubby via NJ. but our team disagrees and has decided to try NG one more time in the coming week, and to give it a few days before making a call whether it's working or not. we're happy with that decision.

before we can try the NG again, Ford has to stop vomiting... different than his usual gagging/dry heaving thing, since thursday night he's actually been producing piles of bile with each gagging fit. friday he was puking every 20 minutes on average. yesterday that eased to about once an hour, and today he's only hurled 4 times so far (knock on wood), so hopefully whatever it is, it is passing by. the team doesn't know why he's bringing up all this bile suddenly, though there is some speculation that it's the placement of his NJ as it has come out 6 cms since it's insertion.

it's been a tough couple days with the consta-puking baby, but there is one piece of good news - he is off the oxygen! for 24 hours now he's been breathing room air all on his own, the marvelous boy that he is. therefore the only thing keeping us from going home now is this whole feeding debate/challenge. fingers crossed we figure it out within the coming week, maybe jan's on the money with predicting home by halloween!