So in summary, Manny did great on IV fluids (his baseline) and he did the same on pedialyte (with only a slight increase of saliva but not a biggie). Thursday night they were going to switch him to formula at the midnight feeds. I asked if we could switch it earlier at the 6 pm feeds so it would have more time to observe him. They really thought he was going to do fine and we'd be discharged today ... I had doubts since they hadn't addressed the milk in the wrong place yet.
6pm feeds ... within a few minutes, he was already showing signs of distress. By 7 he was coughing. For the previous day on pedialyte, he had nothing in his stomach that needed to be vented.
7:30, he had 55 ccs of bile in his stomach returns. 8pm 50 ccs stomach acids. 11pm 50 cc milk. (Stop feeds at 11) 11:30 another 40 ccs milk.
The on call peds doc came in and evaluated him. She said not to resume the feeds and that she'd call the on call GI doc. They all agreed just to go back to the pedialyte and we'd reevaluate a new plan in the morning.
He never got horribly bad ... but it was bad enough. They didn't want him to totally fall apart when they didn't have to.
By midnight, all his symptoms were gone and he slept back at baseline. Oh, and from midnight until now (11:30 am) he's again had nothing that needs to be vented in the gtube. I'm telling you ... it's night and day with him on and off food.
So there are two questions to be addressed. 1) How is milk ending up in the g tube when that is not "possible"? And 2) What can we do to give him a reliable source of nutrition?
Waiting for the plan.
The plan came today in the form of more questions. I'm smart enough to have done the research to know what this eventually comes to if we can't find feeds that work ... TPN... which has it's own set of new, very serious problems. So basically that means we'll try ANYTHING to make sure we exhaust ALL the options prior to giving up.
I'd done some research that seemed to indicate it's possible that his reaction is allergy. He does get congested instantly, etc. So I asked the Doc... is that possible? He didn't think so based on the symptoms but certainly worth a try until we can figure out a solution.
Meanwhile he's on pedialyte only. So he's hydrated but getting basically 0 nutrition and 0 calories. Can't sustain on only water for too long.
6pm... started the new formula. One hour in, we already knew it wasn't going to work. Same reaction as last night (just minus the congestion).
Here's the biggest symptom of concern. We put formula in the J tube. It is supposedly not connected to his G tube in any way (as verified by several xrays). So things put in the J should not end up in the G. Why is it bad to have things in his G? Because his G (stomach) doesn't empty. So I even have to drain any stomach acids, saliva, etc. And that is MINIMAL.
For perspective, in the 18 hours today that he was on pedialyte, I drained 20 ccs of liquid and 750 ccs went in during that time.
But once on formula: in the 3 1/2 hours he was on formula, 149 went in and 168 came out.
So he's LOSING fluids by being on formula?!? How is that even possible?
By 9:30, they called it a failed experiment and turned it off and back to Pedialyte. We'll regroup tomorrow.
Oh, and just for fun, about 4pm, he started scratching like mad. I took off his hospital gown and sure enough, he was covered in a rash and some hives. The only change that has happened that could do that is a change in his motility drug. (It's a low dose antibiotic.) The one he switched us to is "Virtually" the same. But clearly, it's different to Manny! So we got benadryl ... and he got GRUMPY PANTS. Yikes.
So poor little guy ... he's had a 24 hours.
Many of you have asked what has to happen for us to leave the hospital ... he has to have a way to eat that doesn't make him sick. Sounds easier than it is.