Monday, August 1

The evening's events (since Mike left for a church meeting...)

Finish feeding everyone dinner, James drank only about 5 oz of his 'regular' 12.
Let James sit longer at the table to see if he will finish his Pediasure while I start the bath water.
Get one child undressed for the tub (thankfully not in it yet) and hear James throwing up.  He hadn't drank more.
Get James, wipe him off, bring him to the bath instead.  Clean him up, have him sit on his bed so he'll stay calm and hopefully let more of his dinner settle (since not all 5 oz came up, I know, icky details...) and I'm flying solo and need to bathe more kids and that's just the nature of the beast... sitting on his bed is one of the only ways to keep James 'calm' when you can't continuously remind him... and his place at the table is already gross.
Bathe 4 more children very quickly then go back and get James, only to catch the tail end of his second 'episode' of throwing up.
Add James to the draining bath water and give him a second bath (did I mention he doesn't like baths right now?).  Then diaper and dress him and dress the rest of the kids in Pajamas.
All the kids play (Wes and Kris don't get baths in that tub, so we do theirs separately).
Put kids down to bed, about 90 minutes after dinner commenced.  Bring James to the table for a tube feeding since he didn't hold on to his dinner.
Tube feed James the full 12 oz, this time a mixture of Pediasure and Pedialite, thinking the slight runny nose after bath may be more than him taking in bath water and he may be getting a bit of a cold.
Clamp off tube and reach to undo the Mini-button extension when James begins throwing up again.
And again.
And again.
At this point, a brief recap...
James drank 5 oz.
Gave back 2 oz.
Took bath.
Sat quietly for 15 minutes.
Gave back 2-3 oz.
Took bath.
Played for an hour.
Got tube feeding of 12 oz.
Gave back probably about 6-8 in smaller increments.

A total intake of... 4-6 ounces.  And half of that is Pedialite, which doesn't exactly do anything for his caloric needs, but at least will hydrate him.

All this while I'm solo for the night and Michael is at a meeting.  Unfortunately, it is like this more nights than not.  ONLY AT DINNER!  I would love to know why he throws up at dinner every night, when he drinks the same thing, the same quantity, for breakfast and lunch, too.  And breakfast has been 8ish, lunch 11:30ish, and dinner 5:30.  That means that there is only 3.5 hours between breakfast and lunch (for digestion) and yet there's about 6 hours between lunch and dinner-- almost twice the time.  Even still, I couldn't talk James in to taking 1/2 the cup at 2:30ish because he's not hungry yet.

Oh the joys of parenthood, right? :)

Anyone seeing a grave mistake I'm making???  I'm going to start tube feeding 6 oz at 2:30 and offering him only 6 at dinner to see if this may help.  I'm afraid he may not be hungry for dinner if I tube feed him during the day, though, and I do NOT want to go backward, since he was tube-free for a YEAR (aside from when he was sick... just general day to day nutrition) and now he's been throwing up daily and GI wants him to have higher volume (which we're barely keeping up with the 'old' volume of 4 cans/day vs. the new of 5 cans) so... now he's getting a tube feeding almost every night.

I definitely prefer not to feed him during his sleep because he's such an active sleeper as well as my concern that he will throw up during the tube feeding at night and we wouldn't hear him.  We monitor the bedrooms, but he's a "quiet puker" LOL.

Anyway... I realize I've posted before (and over and over again LOL) but today is one more day on this journey and I hold out hope that some day someone's going to read this and say "that sounds like what happened with ____ and ____ seemed to help him!"  :)

GI appointment is the 16th :D  Can't come soon enough, I'm afraid...

8 comments:

  1. I think the idea of giving him some around 2:30 is a idea that sounds good. Maybe the acid builds up between dinner and lunch

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  2. Having not followed James' history very much.... (so may be totally off base here)..... I worked with a little girl who struggled soooo much with vomiting.... and she usually was worse at the end of the day. She also had times (several weeks) when she didn't vomit. But eventually as doctor's continued to push for increasing volume, because she needed the calories........ mom pushed (though all doctors really didn't think allergies would be causing it) hard to get allergy testing done, including looking at "sensitivities" not just pure allergies. Little sweetheart had many allergies/sensitivities, but once all of those things were removed...... she drank rice milk, and gradually added other non-sensitive foods/and a very expensive formula (that I can't remember what it was..... although could contact them to find out). She quit vomiting and started gaining weight like a champ.

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  3. We have been home with our daughter from Taiwan for almost 8 months and have had very similar problems with vomiting. I think overall she has vomited more days than not since being home. We have been through all the GI testing and have came up with NOTHING. One thing they have looked at with our daughter is seizures. We still really have not found anything. We were doing a mixture of milk (lactose free milk) and pediasure. Recently I have taken her off of the lactose free milk and have only been doing pediasure..That has seemed to help. Although I have no clue why since we have tested milk protein and lactose allergies. However when reading your post, I thought about something I read on the pediasure bottle the other day when I was searching and searching to try to find an answer for us. It says that is not suitable for kids with galactosemia. From what I researched it is fairly rare, but it may be something to look at. One reason is from I have read, the reactions from it escalate the more sugar galactose a person takes in. It is impossible to completely take it out of diet. But to me it would make sense why he would vomit at night after having it all day. Just something else to look at. Good luck finding an answer. I know it has been so hard for us to "live" according to when vomiting may occur.

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  4. Mer- Does James have reflux, too? I'm anticipating since he's working with GI doc that he's been tested for celiac regular. Just wondering if he's maybe milk protein intolerant (doesn't have to be allergic- yet)-- casein. 3 of my 4 had reflux issues & some vomiting on milk product with casein. By the time I got to Sabi-- she didn't tolerate me consuming casein.Sky always did the end of the day fillup/vomiting MORE. Very stressful. We didn't know until she was 3 to try to eliminate dairy-- ironically her ear infections, reflux, derma issues, & asthma all really nearly disappeared. Another thing to consider is adding digestive enzymes to his tube feeds. We use Klaire Labs Vitalzymes-- kids chew at meals, but no reason you couldn't crush them up & add to his pedia drink mixture. Casein is very hard to break down in general & a lot of people have a lack of digestive enzyme activity & thus develop food allergies. Hope he gets better soon. You're a warrior MOM. => Tanya

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  5. sounds like a fundoplication is going to be needed
    - it made all the difference to Isaac (and it means they never vomit in your bed as they can;t any longer vomit!)
    our surgeon said if kids still have reflux after age one they never outgrow it

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  6. Poor James and poor mommy too! Our son tommy is James age and gets 16-24 ounces of milk a day in his gtube. Still eats plenty orally too. No night feeds and only 6oz at a feeding. Just thought I would share Tommys feeding as it may be helpful. Hang in there!

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  7. Poor kiddo. :( Have you looked into cyclical vomiting syndrome? Kind of sounds like that (though I don't know a lot about it). Hope you find a solution soon.

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  8. I have came across your blog and just wanted to thank you for all your posting it is great to read. I am excited about the parenting series your are starting. Just wanted to chime in here regarding your son's vomitting. Not sure all the circumstances so this is just an idea to explore. My son, who is younger almost two, is g tube fed and was on elecare only for awhile and tried boost essential (like pediasure) and that was worse for him. He would throw up all the time it was horrible. I weaned him off the formula and began blending up food for him and giving it to him through the g tube and all vomiting ceased. I blend for him quionoa (grains), milk, yogurt, chicken, apples, kale, spinach, avacaodo, etc and he is finally gaining weight. There is a yahoo group dedicated to parents doing the blenderized diet and also a handbook available through mealtime notions. (A google search would pull up both) I'm not sure if it would work for your son or not but it is really worth the exploration. (P.s. My son's doctors were leary but are not supportive as he is gaining weight and was not on the formula).

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