Saturday, July 24, 2010

Day 4

And things are moving along pretty well. He's still a tiny bit puffy, but looks much better than yesterday. And the really good news is that he's been tolerating all his tube feedings very well, and hasn't thrown up or anything at all. He's occasionally gotten a bit fussy during feedings, but I think that's mostly because the dietician has him on a really stupid feeding schedule.

Ordinarily we feed Magnus many small meals; he usually eats every 1 to 2 hours during the day and consumes 1-3 ounces at each feeding. This is how he chooses to eat, and I think it's because when he has bigger meals, it aggravates his reflux. We told the dietician that our plan for when we go home is to feed him ad libitum from the bottle during the day, and then do continuous tube feeding at night to bring him up to his goal volume for the day. I guess the dietician just completely threw this plan out the window, because what she ordered for him was 4 ounce feedings every 3 hours; he takes whatever he will from the bottle, and then he gets the rest as a bolus through the tube. This sounded completely nonsensical to me, because why would he tolerate such large feedings through the tube when he won't tolerate them by mouth? Luckily, though, thanks to the fact that everything is always running behind in the hospital, in practice, he ends up getting all his tube feedings late, so it ends up getting spread out reasonably well. Anyway, I don't really care what we do here as long as he's not too miserable and we can get out of here soon, and it seems that we are well on track to do so.

His nighttime feeding plan was equally ridiculous. The idea was that his last bolus feed during the daytime would be at 5 p.m., and then he would start continuous feeding at a very slow rate, 5ccs (about 1/6 of an ounce) per hour. Of course that meant that he went for 3 hours with no food, and then got hardly anything through the tube, so of course he got hungry and fussed. Basically, after stuffing him full of food all day, they were starving him at night! So I gave him a bottle and he went to sleep. Luckily, the nurses have been pretty cool about our subversion of the plan.

Anyway, like I said, despite the stupid feeding plans, Magnus has been tolerating all his feeding well, and has been gaining weight. Fingers crossed that this continues!


  1. I commented before, but it seems to have disappeared into the tech zone somewhere out there. In any case, this is great news, and I'm thrilled and proud that Magnus has subversive parents who advocate for him!

  2. Nobody knows Magnus like you do and you have to do what works best for him. I'm happy to hear that everything is going well and discharge doesn't seem too far off.

  3. Hi,

    I wondered if you had heard of the Oley Foundation. We offer free information and peer support to families like yours with a member on home tube or IV feeding.

    Check out our web site at For a good overview, click on the "New to Oley" button.

    Feel free to call/email me if you have any questions or would like to meet another family in a similar situation.

    Warm regards,
    Roslyn Dahl
    Oley Foundation Staff Member
    (800) 776-OLEY

  4. Hey Jen,

    I just caught up with the story. I'm sorry you're back in the hospital, and that your vacation got screwed up. It's no fun there. I hope all is going well, and that Mr. M is on the mend and starts growing like crazy.