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Re:Heidi/Re: [Mito] Re: Help - Intestinal/gastric pressure

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  • Mom2ColemanKidz3
    Hi Meagan, If everything s backing up, placement can change within hours. I ve had it happen with ^Heather^, she had the placement checked, got back up to the
    Message 1 of 3 , Jun 1, 2009
      Hi Meagan,
      If everything's backing up, placement can change within hours.  I've had it happen with ^Heather^, she had the placement checked, got back up to the floor after about an hour or 2 in recovery, started pedialyte, and the tube was back in her stomach.  With pseudo-obstruction, there's usually reverse motility too, so if she's been draining this much for a good several days now, I wouldn't hang your hat on last week's placement, sad to say.  It is possible to check separate G and J drainage with a G-J tube, that's actually the only time I've used it.  Just test whatever comes out of each port.  You can also check what's coming out of the stoma to see where that's been.  (It's a good test to see if all the reflux meds are actually being absorbed and doing their job as well!)
       
      A G-J tube holds nothing over separate G and J tubes.  In my case, my surgeon did both at once, due to total GP as well as lack of peristalsis in the esophagus and duodenum.  Although I can't say it's kept me off TPN, it's allowed me to continue to get feeds (the amount varies) and, more importantly, get enteral meds and have a higher chance that they'll be absorbed (I can't say it's a guarantee, but at least I know they're going to be in the gut a lot longer than if they were given through a G.)  ^Heather^ had her G since infancy and the J at 16 months and while it didn't change her TPN dependence, it was a way to give meds, and also another place to put to drainage when she needed it.  It's another surgery, it's painful, it's scary, ^H^ had lots of complications (including status epilepticus following the anesthesia and then a pneumothorax) but I have to say it was worth it for her quality of life. 
       
      Good luck!
      Heidi
    • Meagan
      All docs involved don t seem to trust her tube right now.  She was admitted tonight (after a nightmare day/evening in the ER).  She is not getting feeds
      Message 2 of 3 , Jun 1, 2009
        All docs involved don't seem to trust her tube right now.  She was admitted tonight (after a nightmare day/evening in the ER).  She is not getting feeds tonight (IV fluids are running).  Not sure what they are going to do with her tomorrow.  I have a bad feeling about all that is going on with her tube.  She is very dehydrated right now (only 1 wet diaper in 24hrs) so that is everyone's first concern.  I'm hoping this is all worked out quickly.  We were 8 days away from having 1 full year with no hospital admissions. 

        Meagan (mom)
        Alison, 11, Asperger's
        Sophia, 5, Mito


        --- On Mon, 6/1/09, Mom2ColemanKidz3 <mom2colemankidz3@...> wrote:

        From: Mom2ColemanKidz3 <mom2colemankidz3@...>
        Subject: Re:Heidi/Re: [Mito] Re: Help - Intestinal/gastric pressure
        To: mito@yahoogroups.com
        Date: Monday, June 1, 2009, 9:06 AM



        Hi Meagan,
        If everything's backing up, placement can change within hours.  I've had it happen with ^Heather^, she had the placement checked, got back up to the floor after about an hour or 2 in recovery, started pedialyte, and the tube was back in her stomach.  With pseudo-obstruction, there's usually reverse motility too, so if she's been draining this much for a good several days now, I wouldn't hang your hat on last week's placement, sad to say.  It is possible to check separate G and J drainage with a G-J tube, that's actually the only time I've used it.  Just test whatever comes out of each port.  You can also check what's coming out of the stoma to see where that's been.  (It's a good test to see if all the reflux meds are actually being absorbed and doing their job as well!)
         
        A G-J tube holds nothing over separate G and J tubes.  In my case, my surgeon did both at once, due to total GP as well as lack of peristalsis in the esophagus and duodenum.  Although I can't say it's kept me off TPN, it's allowed me to continue to get feeds (the amount varies) and, more importantly, get enteral meds and have a higher chance that they'll be absorbed (I can't say it's a guarantee, but at least I know they're going to be in the gut a lot longer than if they were given through a G.)  ^Heather^ had her G since infancy and the J at 16 months and while it didn't change her TPN dependence, it was a way to give meds, and also another place to put to drainage when she needed it.  It's another surgery, it's painful, it's scary, ^H^ had lots of complications (including status epilepticus following the anesthesia and then a pneumothorax) but I have to say it was worth it for her quality of life. 
         
        Good luck!
        Heidi



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