Sunday, August 22, 2010


Got any advice on this? I'll take it, ideas, whatever you've got (but be nice :) ).

James has always processed food VERY slowly. For instance one day he ate breakfast at 7am, 10 oz. Then he spit up, say, 3 oz. Then he started on lunch, got an ounce or two in at 11:30, and spit up 5 or 6 oz. Problem being, at 11:30 it looked and smelled JUST LIKE when it came out at 7am... but it obviously had been sitting in the stomach for 4 1/2 hours already (at least most of it had). Yes, gross... I know...

Now with the Salmonella, that slows down the gut even more. While in the hospital he drank 8 oz of Pediasure and leaked out about 5 oz of it through his g-tube over a period of 6.5 hours. That means that in that 6.5 hours only 3 oz was digested. The reason we can be sure of this is because at the end of that time his g-tube didn't just stop leaking, but it began leaking clear for a bit. No more milk.

That brings me to yesterday. We were released from the hospital with the plan of 3 oz every hour 10 hours/day. Hoping and praying it would stay in. It isn't. As soon as he sits up on his own, it is leaking out. Those darn ab muscles... And I can't very well get a very mobile 4 yr old to lay down all day (like he was at the hospital). I am putting him in his highchair, reclined, to drink, and having him sit there for about 20 min after (which he hates). But at that point, he has to get down! That's 25 min of sitting EVERY HOUR. As soon as I put him in the playpen (aka germ containment device) he has leaked everywhere within a matter of 20 minutes. At least half of what is going in is coming back out.

Based on his weight (he lost down to ~24.5lbs) and the idea that a person in general healthy circumstances should have 1.5 oz of liquid per pound of weight daily (and more if having symptoms like diarrhea), he should be getting about 37 oz of liquid on a normal healthy day. He usually drinks about 32 oz (4 cans of Pediasure) in a day. Giving him 80ml every hour all day, he will need to drink 12 bottles a day to get that 'normal' 32 oz in. With more than half of it leaking, he would need to do it every hour, literally 24 hours a day. Assuming that only half continues to leak out.

And that is with spending about half of his waking hours sitting in a high chair so that the entire amount doesn't leak back out.

Ok, there you go, any ideas, thoughts, etc?? The tube itself is the "best we can do" at least for the next 24 hours until I can call my ped again and see what she says. One idea from the GI (which they said several times they were going to do but never did... and I am not comfortable doing it at home) was to remove the tube for 1-2 hours and let the diameter close up a bit then reinsert the tube. A tighter fit. Makes sense... but no idea if that would do it, and, again, I'm not comfortable doing that at home (in case I can't get it back in if it closes too much!)

Any thoughts on alternative plans for feeding and keeping it in... ANYTHING??

(PS. He has not had any stools today. Which I think is good. Except that he also has not wet. Not even overnight. I'm not overly concerned yet because he will often 'hold it' a long time and with less to need to pee, he may hold it longer. If he hasn't had a good wet diaper (or two or three) by morning we will be visiting the Ped.)

((PPS.He is already on EryPed (erythromiacin- sp? ) due to his slow motilty.))


  1. While you're working out the gastric emptying thing could you put him back on his feeding pump at a very low dose? At least that way he would get the calories. You could do it just at night (so he's laying down) or for daytime our pump came with this little back pack so the child can carry it around with them. Sunshine is pretty tolerant of it so hopefully it would work for James too. Just a thought.

  2. Could you thicken the liqued? Would he take it thickened? It might not leak as bad. I have a little one on pediasure exclusively and she would not take it thickened unless she is VERY hungry and then still might not take as much, so this may not work. Is there any way to add calories to the liqued so that even if he is getting less in content he is getting more in calories? I am praying for your butterbean! Jamie

  3. Meredith-

    I don't know the whole history of your little one, as I am new to your story.

    Our little Ricky (almost 4y.o. with Ds) has a Nissen, g-tube and pyloroplasty done 1 1/2 years ago. I was going nuts with the reflux and I could only feed 3 ozs. at a time at age 2 1/2, every 3 hours. Three hours later he was spitting up and acting hungry. After years of this (and having thickened liquids to try to keeep it down and also for aspiration of thin liquids which we still have) we eventually ended up in the ER with a Sodium level of 177!!! Yes, unheard of by anyone in the ER and PICU. It is a long, slow, delicate process to get it down properly without causing problem. So, I say this, first of all, to keep an eye long term on his sodium. It shocked everyone. Hopefully won't happen but for us he was living like a lizard in the desert with very low liquids for a long time (no free water), getting his liquids through peach cubes and green beans basically. He lived like that until he got rotovirus, and then that was it. There was no way to keep up.

    If they would have done the Nissen alone, we would have had serious issues. They would have been tying up the top and the bottom would have not been able to empty, and well...trouble. They did a gastric emptying test and discovered he emptied at a rate of 8%. They said the average person was at 30-40% per hour. Did you already do that test? The erythromycin didn't help us at all for emptying at a rate such as that.

    Everything has worked BEAUTIFULLY with us when we had these three things done. Still have the tube b/c it is so handy. Someday will get rid of it.

    Sorry if I am telling you things you are well aware I said I don't know your situation.


  4. Motillium (think that is the spelling) is used here to help digestion. We used it when Aden was a baby, thought he had to be rare and it didn’t’ agree with him. Moves everything through he gut faster really good for kids with low tone…

  5. We are probably moving on to the *J* tube. It will by pass the stomach and go into the small intestine. You could also slow the feeds down to what he will tolerate. How far in advance do you give the erythromycin? We have started doing it half hour in advance which has helped a little more.
    Hope you figure out something soon!