GI appointment UPDATED AGAIN on PAGE 2
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Thread: GI appointment UPDATED AGAIN on PAGE 2

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    Default GI appointment UPDATED AGAIN on PAGE 2

    UPDATE: I took him for a modified barium swallow today, and it threw me for a loop. Apparently, he is collecting food and liquids in the back of his throat and is at "very high risk" for aspiration. They are strongly recommending nothing by mouth until they can fix it, which will mean a balloon dilation of his esophagus. Until then, nothing but tube feedings, and he is really devastated. The one thing he looks forward to every day is eating, and now he can't. And he feels hungry all the time because the tube feedings aren't filling him up. The GI doctor ordered 2 oz of Pediasure every 2 hours, which if you do the math is only 1 1/2 cans a day, not nearly enough caloric intake and not nearly enough to make him feel full. This recommendation came after hours, so I will be calling first thing in the morning to complain and see what they can change.

    Hi all. I'm not going to go into a lot of detail, but I feel like we're going somewhere with the GI appointment. She totally validated my concerns about his GI system slowing down after the stimulator implants and my instincts that the new formula that the nutritionist recommended could be part of the problem. She stated that when kids get stimulator implants, it frequently causes issues with the entire digestive system. She ordered a gastric emptying scan to see if his stomach is emptying properly. She also wants him to have a modified barium swallow, which he's already scheduled for today. Then she wants us to see the nutritionist. He's having so much trouble eating that he's using more calories to eat than he is getting from the food. The concentrated formula does not have enough water in it to keep the intestines working, and the more concentrated it is, the longer it takes to empty from the stomach. There are a whole lot of factors related to what's going on with him, and I am so glad that we saw the GI doctor. I finally feel like we have a plan.
    Last edited by 2sonsplus1; 03-04-2012 at 12:14 AM.

    Deb ................. DH Norm
    DS Caleb, 13 ...... DS Patrick, 12
    DS Isaiah, 8 ......... DS Thomas, 7

    DD Cherish, 6....... DD Emily, 7\18\13 ....... Ripple, 17
    William, 14 weeks, 4/11/12

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    It sounds like you have a really good GI doc. I hope that she gets everything running smoothing ASAP!!!
    Natalie & Dan - June 2, 2001
    Samma - Nov. 5, 2004
    Tommy - Oct. 19, 2007




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    Posting Addict wishing4agirl's Avatar
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    I will take that as good news. It is so nice to have a doctor validate your concerns. It sounds like it must mess with the autonomic nervous system.

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    Community Host sarahsunshine's Avatar
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    That’s Wonderful! It must be a huge relief to have someone who really seems to be working to help him. I’m so glad that you got in early, and I hope that you get some results quickly. I hope Isaiah gets some relief soon.
    Skyler Dylan 22 April 1999
    Reed Aslan 17 June 2007 ~ 8 September 2008
    Ivy Rayne 3 May 2009
    Leo Spencer 2 Sept 2010
    Forrest Reed 15 Aug 2012


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    Posting Addict gardenbug's Avatar
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    Yeah for progress!
    Leo (3 1/2) with Malcolm the cat

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    Posting Addict wishing4agirl's Avatar
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    One step forward and two steps back. Yes call and complain. He can't go that long without the right amount of calories. So glad you know this though.

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    Posting Addict gardenbug's Avatar
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    Please keep us posted. You are so on top of everything! You must be exhausted...
    Very best wishes!
    Leo (3 1/2) with Malcolm the cat

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    I hope you get an updated amount. That's crazy. I can't imagine either of my kids being ok on that little food.
    Natalie & Dan - June 2, 2001
    Samma - Nov. 5, 2004
    Tommy - Oct. 19, 2007




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    Community Host sarahsunshine's Avatar
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    Thank goodness he's got you! As PP said, one step forward, two steps back. Optimistically... at least we are moving forward on getting him able to eat. When do you find out a date for the balloon dilation? I hope it's soon so he can eat! Can he chew at all? Have a sucker/lolipop for flavour? Do you still have help?

    Hugs to everyone. I can imagine being exhausted without other children or being pregnant. You are a complete hero! Now don't forget to take care of yourself either!
    Skyler Dylan 22 April 1999
    Reed Aslan 17 June 2007 ~ 8 September 2008
    Ivy Rayne 3 May 2009
    Leo Spencer 2 Sept 2010
    Forrest Reed 15 Aug 2012


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    Quote Originally Posted by sarahsunshine View Post
    Thank goodness he's got you! As PP said, one step forward, two steps back. Optimistically... at least we are moving forward on getting him able to eat. When do you find out a date for the balloon dilation? I hope it's soon so he can eat! Can he chew at all? Have a sucker/lolipop for flavour? Do you still have help?

    Hugs to everyone. I can imagine being exhausted without other children or being pregnant. You are a complete hero! Now don't forget to take care of yourself either!
    Thanks so much! The doctor hasn't prescribed a balloon dilatation, so I don't even know if she's going to do it.

    We actually got to see the nutritionist today, and she calculated the number of calories he needs, and it's probably twice what he was getting over the last week or so. We have a plan in place, we just need the doctor's prescription. On the other front (or back), he hasn't had a BM since Friday. Last night, he wet the bed every 1 - 1.5 hours all night, which is due to constipation. The doctor ordered an abdominal x-ray, but we haven't heard the results yet. This evening, he's in really bad shape neurologically. I gave him a suppository, but don't seem to be getting any results. I don't know what else to do. I feel like we keep taking 1 step forward and 2 steps back.

    Deb ................. DH Norm
    DS Caleb, 13 ...... DS Patrick, 12
    DS Isaiah, 8 ......... DS Thomas, 7

    DD Cherish, 6....... DD Emily, 7\18\13 ....... Ripple, 17
    William, 14 weeks, 4/11/12

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