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Re: [Mito] Update on Ashley Brooke

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  • Steve and Denise
    Linda, Miranda has both a port and a feeding tube. If just getting her hydrated and fed is the issue, the feeding tube would do the job BUT if you are also
    Message 1 of 9 , Nov 1, 2002
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      Linda,
      Miranda has both a port and a feeding tube. If just getting her
      hydrated and fed is the issue, the feeding tube would do the job BUT if you
      are also dealing with issues of chronic illness and neding IV fluids and
      medications, asking for a port as well would not be out of line in my
      opinion. I understand getting a feeding tube is a huge stpe, but please
      know, its really not that bad and not hard to deal with. Once she does have
      it you will be kicking yourself wondering why you waited so long!

      Denise


      ----- Original Message -----
      From: "Linda DeMoss" <buck@...>
      To: <Mito@yahoogroups.com>
      Sent: Friday, November 01, 2002 3:11 AM
      Subject: Re: [Mito] Update on Ashley Brooke


      > Thanks Kathy.I really do think it's time for the g-tube.We have soooooo
      much
      > trouble keeping her hydrated.The last 2 times we've tried an IV they had a
      > problem getting it started,and when they did get it going the vein would
      > blow.We talked about a port,but Dr.Hersh felt that would be a waste since
      he
      > feels she is going to have to have a g-tube.From her last MRI he felt that
      > she is going to start having more trouble swallowing and since the tube
      can
      > be used for higher callories,liquids and meds this is our best option.
      > Like I said I do know it's time to try something.What we're doing is no
      > longer working.It's just going to take me a few days to adjust to the
      idea.
      > I also worry about the trip to Louisville( 150 miles) and it looks like it
      > may be 2 or 3 trips.When Ashley feels good and ask to go to WalMart (7
      > miles) she is exhausted for a couple of days.
      > Linda,Mom to Ashley Brooke
      > ----- Original Message -----
      > From: <klboone@...>
      > To: <Mito@yahoogroups.com>
      > Sent: Thursday, October 31, 2002 8:39 PM
      > Subject: Re: [Mito] Update on Ashley Brooke
      >
      >
      > > Linda
      > > I speak from two sides of the coin. You see, my granddaughter Audrey,
      > > 14 mos, has mito and I am also a nurse. My grandmother side is the
      > > protective side that says wait as long as you possibly can for the
      > > feeding tube. However, the nurse side of me says if you can have a
      > > procedure done while you are still relatively healthy, at least the best
      > > you can be, you are better off. This is a hard decision for you to
      > > make, and one I am afraid my daughter is going to have to make in the
      > > future and all I can say is let your heart be your guide, you will know
      > > when the time will be the right time for the procedure to be done. Hang
      > > in there, we are all with you.
      > > God bless
      > > Kathy
      > > Grandma to Audrey, 14 mos
      > >
      > >
      > >
      > > Please contact mito-owner@yahoogroups.com with any problems or
      questions.
      > >
      > > Your use of Yahoo! Groups is subject to
      http://docs.yahoo.com/info/terms/
      > >
      > >
      >
      >
      >
      > Please contact mito-owner@yahoogroups.com with any problems or questions.
      >
      > Your use of Yahoo! Groups is subject to http://docs.yahoo.com/info/terms/
      >
      >
      >
    • Linda DeMoss
      Denise, I just got off the phone with Ashley s PCP,he told me that he and Dr Hersh had discussed getting the port done at the same time as the g-tube. It does
      Message 2 of 9 , Nov 1, 2002
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        Denise,
        I just got off the phone with Ashley's PCP,he told me that he and Dr Hersh
        had discussed getting the port done at the same time as the g-tube. It does
        make sense to have them both done at once.
        Linda,Mom to Ashley Brooke


        ----- Original Message -----
        From: "Steve and Denise" <lappan@...>
        To: <Mito@yahoogroups.com>
        Sent: Friday, November 01, 2002 3:59 AM
        Subject: Re: [Mito] Update on Ashley Brooke


        > Linda,
        > Miranda has both a port and a feeding tube. If just getting her
        > hydrated and fed is the issue, the feeding tube would do the job BUT if
        you
        > are also dealing with issues of chronic illness and neding IV fluids and
        > medications, asking for a port as well would not be out of line in my
        > opinion. I understand getting a feeding tube is a huge stpe, but please
        > know, its really not that bad and not hard to deal with. Once she does
        have
        > it you will be kicking yourself wondering why you waited so long!
        >
        > Denise
        >
        >
        > ----- Original Message -----
        > From: "Linda DeMoss" <buck@...>
        > To: <Mito@yahoogroups.com>
        > Sent: Friday, November 01, 2002 3:11 AM
        > Subject: Re: [Mito] Update on Ashley Brooke
        >
        >
        > > Thanks Kathy.I really do think it's time for the g-tube.We have soooooo
        > much
        > > trouble keeping her hydrated.The last 2 times we've tried an IV they had
        a
        > > problem getting it started,and when they did get it going the vein would
        > > blow.We talked about a port,but Dr.Hersh felt that would be a waste
        since
        > he
        > > feels she is going to have to have a g-tube.From her last MRI he felt
        that
        > > she is going to start having more trouble swallowing and since the tube
        > can
        > > be used for higher callories,liquids and meds this is our best option.
        > > Like I said I do know it's time to try something.What we're doing is no
        > > longer working.It's just going to take me a few days to adjust to the
        > idea.
        > > I also worry about the trip to Louisville( 150 miles) and it looks like
        it
        > > may be 2 or 3 trips.When Ashley feels good and ask to go to WalMart (7
        > > miles) she is exhausted for a couple of days.
        > > Linda,Mom to Ashley Brooke
        > > ----- Original Message -----
        > > From: <klboone@...>
        > > To: <Mito@yahoogroups.com>
        > > Sent: Thursday, October 31, 2002 8:39 PM
        > > Subject: Re: [Mito] Update on Ashley Brooke
        > >
        > >
        > > > Linda
        > > > I speak from two sides of the coin. You see, my granddaughter Audrey,
        > > > 14 mos, has mito and I am also a nurse. My grandmother side is the
        > > > protective side that says wait as long as you possibly can for the
        > > > feeding tube. However, the nurse side of me says if you can have a
        > > > procedure done while you are still relatively healthy, at least the
        best
        > > > you can be, you are better off. This is a hard decision for you to
        > > > make, and one I am afraid my daughter is going to have to make in the
        > > > future and all I can say is let your heart be your guide, you will
        know
        > > > when the time will be the right time for the procedure to be done.
        Hang
        > > > in there, we are all with you.
        > > > God bless
        > > > Kathy
        > > > Grandma to Audrey, 14 mos
        > > >
        > > >
        > > >
        > > > Please contact mito-owner@yahoogroups.com with any problems or
        > questions.
        > > >
        > > > Your use of Yahoo! Groups is subject to
        > http://docs.yahoo.com/info/terms/
        > > >
        > > >
        > >
        > >
        > >
        > > Please contact mito-owner@yahoogroups.com with any problems or
        questions.
        > >
        > > Your use of Yahoo! Groups is subject to
        http://docs.yahoo.com/info/terms/
        > >
        > >
        > >
        >
        >
        >
        > Please contact mito-owner@yahoogroups.com with any problems or questions.
        >
        > Your use of Yahoo! Groups is subject to http://docs.yahoo.com/info/terms/
        >
        >
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