I'm constantly fiddling with the schedule and amount of food Susan gets through her g-tube. I can dilute or concentrate her formula for less or more calories per ounce, give lots of small feeds or fewer bigger ones, try to get most of her formula in her during the day (so she sleeps better) or during the night (so she eats better orally.) Trial and error is pretty much our only way to tell what will work best for her. Remember the game show "Press Your Luck" where the contestants would yell "big money, big money, no whammies, no whammies, STOP!" and if the spinner stopped on the evil little Whammie dude they lost their money? It's kind of like that here. "More calories, more calories, no puking, no puking, STOP!"
Over the year or so we've been playing this game, I've learned that she handles more volume of a lower calorie mix better than a smaller amount of a really concentrated formula. For reasons nobody knows, she tolerates periodic feedings better than continuous pump feeds, but I can only put so much into her at one time without her puking, so we've been doing the two ounces every hour thing for a long time now. It's very hard to keep up with that schedule, and gives her no chance to experience a fullness/hunger cycle - an important step to getting her to eat.
I was talking with the occupational therapist who teaches Susan's eating class and she said it would be really great if we could get her onto a schedule of five ounces of formula every three hours, as that would meet her caloric needs while replicating a more normal eating pattern. Right, I thought. I'd never gotten her to handle more than three and a half ounces at a time.
So, there's this button on the feeding pump that says "INT." There is no mention of this button in the instructions, nor on their website. I'd asked the equipment company if they had a pump that would do periodic rather than continuous feeds. They said they didn't carry any pumps that did that. But I started playing around with the INT button and figured out that I COULD program the pump to give her X number of ounces at Y rate every Z hours. Aha! So I played a game of press my luck, and programmed it to give five ounces over a half hour period every three hours. And what do you know, it worked.
So now I'm using the pump for her daytime feedings too, just hooking her up for the half hour every three hours. Since the pump gives a slower delivery than just dumping it down through a syringe, like I had been doing, her stomach is expanding to accommodate the higher amount. Larger volume is a huge step forward for her. Everyone cross your fingers that it continues to work.
As you can probably tell, I spend a lot of time multiplying calories and ounces and percent of formula vs percent of liquid, not to mention converting ounces to ml's, since of course the pump uses metric measure while the formula nutritional information is in English units. I'm a total math loser too, but I've got the ml's/ounce and calories/ounce thing down pretty well. Sometimes around 3 am I just give up and figure she'll get whatever calories she gets and it'll just have to be good enough.
1 comment:
So I guess INT means interval, eh? Very cool -- I hope the new regime keeps working out for you.
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