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More on Javad

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  • Shannon
    Hi everyone, Well, I guess I have known this time may come. Last night the pulmonologist came by to talk never a good sign in the evening. The team has met
    Message 1 of 22 , Jun 10, 2005
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      Hi everyone,

      Well, I guess I have known this time may come. Last night the pulmonologist
      came by to "talk" never a good sign in the evening. The team has met and
      decided that they feel it is in Javad's best interest to put a trach in. This is a
      hard blow for David and I because up until this time, we thought we have
      flown under the radar. I was told that this episode on Monday was far worse
      that we first thought. (We being David and I). THey were concerned that Javad
      had taken a mental "hit" because his lack of oxygen for so long. I was not
      given this perspective.

      Although I know what is the best decision is, it is very hard. Traching Javad
      represents a certain sense of failure to me. I feel like I should have caught
      what was going on. I know that I need to let that go and wrap my head around
      things. I am sad. I know that many of you have already been here, made this
      decision and thought it better. I guess I have thought that we would be the
      ones to make it without.

      Javad is still intubated. The medical team doesn't want to extubate him. They
      have indicated that if we don't trach him that they don't feel comfortable caring
      for him. They think the risk is too high. We would have to start over, another
      hospital, new doctors I don't have the energy to start over and don't want to
      have a DNR. I love Javad with all my heart, cannot imagine him being gone. I
      feelforced into a decision I am not ready to make. Maybe in a year, I will be
      glad, feel good about it, but for now, I don't. I mostly feel sad and kinda empty.

      I am sorry this is such a downer. I worry that my words will have a negative
      effect on those who are struggling with day to day decisions. I know that in the
      bog picture of life, this is just a small bump.

      As one doctor said too me, "Your journey with Javad is like rowing a boat
      across the ocean...some days it's smooth sailing and everything is good and
      out of the blue comes a huge storm and you tie everything down and hope to
      ride the waves."

      I feel like the storm is huge and I am in the boat alone!

      Shannon
    • Amanda Hollingsworth
      Shannon, First of all, ((((HUGS)))). This is absolutely a difficult decision and I am hurting for you and David and Javad. Do me a favor...try not to look at
      Message 2 of 22 , Jun 10, 2005
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        Shannon,
         
        First of all, ((((HUGS)))).  This is absolutely a difficult decision and I am hurting for you and David and Javad. 
         
        Do me a favor...try not to look at traching Javad as a failure, but instead, think of it as giving him a new life.  As much as I would of loved for Jacob to never have been trached, I thank God every day that we did it so early because I know he would be much sicker a lot more often.  With the trach, you will find that the illnesses will come less and less, and when they do, they will be so much easier to handle.  No ET tubes damaging his airway even further.  That in of itself is enough to cause a whole new set of problems sometimes requiring a trach.  All those secretions you mentioned Javad was having can more easily be suctioned out.  Ventilating him will be so much easier and much less traumatic, and you can do it at home. 
         
        I wish there were more words I could say to you at this time, but I know it will just take time.  Yes, the trach will be difficult at times, but it is certainly doable and you and David certainly have what it takes.  If you ever want to chat privately or call me, please feel free to do so.  I can e-mail my phone number to you.
         
        I will be keeping you all in my thoughts and prayers.
         
        Love,
        Amanda
         
        -------Original Message-------
         
        From: Shannon
        Date: 06/10/05 13:48:59
        Subject: [Myotubular_Myopathy] More on Javad
         
        Hi everyone,
         
        Well, I guess I have known this time may come. Last night the pulmonologist
        came by to "talk" never a good sign in the evening. The team has met and
        decided that they feel it is in Javad's best interest to put a trach in. This is a
        hard blow for David and I because up until this time, we thought we have
        flown under the radar. I was told that this episode on Monday was far worse
        that we first thought. (We being David and I). THey were concerned that Javad
        had taken a mental "hit" because his lack of oxygen for so long. I was not
        given this perspective.
         
        Although I know what is the best decision is, it is very hard. Traching Javad
        represents  a certain sense of failure to me. I feel like I should have caught
        what was going on. I know that I need to let that go and wrap my head around
        things. I am sad. I know that many of you have already been here, made this
        decision and thought it better. I guess I have thought that we would be the
        ones to make it without.
         
        Javad is still intubated. The medical team doesn't want to extubate him. They
        have indicated that if we don't trach him that they don't feel comfortable caring
        for him. They think the risk is too high. We would have to start over, another
        hospital, new doctors I don't have the energy to start over and don't want to
        have  a DNR. I love Javad with all my heart, cannot imagine him being gone. I
        feelforced into a decision I am not ready to make. Maybe in a year, I will be
        glad, feel good about it, but for now, I don't. I mostly feel sad and kinda empty.
         
        I am sorry this is such a downer. I  worry that my words will have a negative
        effect on those who are struggling with day to day decisions. I know that in the
        bog picture of life, this is just a small bump.
         
        As one doctor said too me, "Your journey with Javad is like rowing a boat
        across the ocean...some days it's smooth sailing and everything is good and
        out of the blue comes a huge storm and you tie everything down and hope to
        ride the waves."
         
        I feel like the storm is huge and I am in the boat alone!
         
        Shannon
         
         
         
         
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      • Kiera Merriam
        Hi Shannon, I can only imagine what facing this step must feel like after having gone so long without it but it sounds like you re sure it s the right step to
        Message 3 of 22 , Jun 10, 2005
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          Hi Shannon,

          I can only imagine what facing this step must feel
          like after having gone so long without it but it
          sounds like you're sure it's the right step to take.
          Coming to terms with it, that's a different story. I
          pray that you find the understanding and courage
          needed to be at peace with it.

          My thoughts are with you.

          Kiera




          --- Shannon <smashintwo66@...> wrote:


          ---------------------------------
          Hi everyone,

          Well, I guess I have known this time may come. Last
          night the pulmonologist
          came by to "talk" never a good sign in the evening.
          The team has met and
          decided that they feel it is in Javad's best interest
          to put a trach in. This is a
          hard blow for David and I because up until this time,
          we thought we have
          flown under the radar. I was told that this episode on
          Monday was far worse
          that we first thought. (We being David and I). THey
          were concerned that Javad
          had taken a mental "hit" because his lack of oxygen
          for so long. I was not
          given this perspective.

          Although I know what is the best decision is, it is
          very hard. Traching Javad
          represents a certain sense of failure to me. I feel
          like I should have caught
          what was going on. I know that I need to let that go
          and wrap my head around
          things. I am sad. I know that many of you have already
          been here, made this
          decision and thought it better. I guess I have thought
          that we would be the
          ones to make it without.

          Javad is still intubated. The medical team doesn't
          want to extubate him. They
          have indicated that if we don't trach him that they
          don't feel comfortable caring
          for him. They think the risk is too high. We would
          have to start over, another
          hospital, new doctors I don't have the energy to start
          over and don't want to
          have a DNR. I love Javad with all my heart, cannot
          imagine him being gone. I
          feelforced into a decision I am not ready to make.
          Maybe in a year, I will be
          glad, feel good about it, but for now, I don't. I
          mostly feel sad and kinda empty.

          I am sorry this is such a downer. I worry that my
          words will have a negative
          effect on those who are struggling with day to day
          decisions. I know that in the
          bog picture of life, this is just a small bump.

          As one doctor said too me, "Your journey with Javad is
          like rowing a boat
          across the ocean...some days it's smooth sailing and
          everything is good and
          out of the blue comes a huge storm and you tie
          everything down and hope to
          ride the waves."

          I feel like the storm is huge and I am in the boat
          alone!

          Shannon




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        • ANN MILLER
          Shannon, My heart goes out to you. I know this is a hard thing for you to do. But I agree with Amanda. The trach will makes things much easier on you, David
          Message 4 of 22 , Jun 10, 2005
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            Shannon,
             
            My heart goes out to you.  I know this is a hard thing for you to do.  But I
            agree with Amanda.  The trach will makes things much easier on you,
            David and ofcourse Javad. 
             
            It will be hard at first.  Take some getting use too.  But with time it will get
            easier.  
             
            When he is in the hospital, there will be less hoses/tubes stuck here,
            there and everywhere.  Hospital stays should be less.  You will be able
            to do alot more at home, where I'm sure he is much happier.  You will be
            able to tell when he is getting sick sooner. 
             
            A lot of people who see Kyle has a trach, say "Oh, the poor little guy". 
            I say itÂ’s God's blessing.  Without it he would probably not be here with
            us.   It's all in the frame of mind.  Some see the glass half empty, I see it
            half full.
             
            If you need to vent or have more questions, we are here for you.  Give
            Javad a big hug and kiss for us.  He will do great!
             
            Love
             
            Darlene
             
             
             
             
             
             
            ----- Original Message -----
            From: Shannon
            Sent: Friday, June 10, 2005 1:48 PM
            Subject: [Myotubular_Myopathy] More on Javad

            Hi everyone,

            Well, I guess I have known this time may come. Last night the pulmonologist
            came by to "talk" never a good sign in the evening. The team has met and
            decided that they feel it is in Javad's best interest to put a trach in. This is a
            hard blow for David and I because up until this time, we thought we have
            flown under the radar. I was told that this episode on Monday was far worse
            that we first thought. (We being David and I). THey were concerned that Javad
            had taken a mental "hit" because his lack of oxygen for so long. I was not
            given this perspective.

            Although I know what is the best decision is, it is very hard. Traching Javad
            represents  a certain sense of failure to me. I feel like I should have caught
            what was going on. I know that I need to let that go and wrap my head around
            things. I am sad. I know that many of you have already been here, made this
            decision and thought it better. I guess I have thought that we would be the
            ones to make it without.

            Javad is still intubated. The medical team doesn't want to extubate him. They
            have indicated that if we don't trach him that they don't feel comfortable caring
            for him. They think the risk is too high. We would have to start over, another
            hospital, new doctors I don't have the energy to start over and don't want to
            have  a DNR. I love Javad with all my heart, cannot imagine him being gone. I
            feelforced into a decision I am not ready to make. Maybe in a year, I will be
            glad, feel good about it, but for now, I don't. I mostly feel sad and kinda empty.

            I am sorry this is such a downer. I  worry that my words will have a negative
            effect on those who are struggling with day to day decisions. I know that in the
            bog picture of life, this is just a small bump.

            As one doctor said too me, "Your journey with Javad is like rowing a boat
            across the ocean...some days it's smooth sailing and everything is good and
            out of the blue comes a huge storm and you tie everything down and hope to
            ride the waves."

            I feel like the storm is huge and I am in the boat alone!

            Shannon




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            Dying to be thin?
            Anorexia. Narrated by Julianne Moore .
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            <*> To visit your group on the web, go to:
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                Myotubular_Myopathy-unsubscribe@yahoogroups.com

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                http://docs.yahoo.com/info/terms/
             



          • rachel wriglry
            hi shannon our hearts go out to you and your family dont ever feel alone theres loads of people here willing to talk to you we have you in our thoughts take
            Message 5 of 22 , Jun 10, 2005
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              hi shannon our hearts go out to you and your family dont ever feel alone theres loads of people here willing to talk to you we have you in our thoughts take care
              love and best wishes
              rachel&family

              Shannon <smashintwo66@...> wrote:
              Hi everyone,

              Well, I guess I have known this time may come. Last night the pulmonologist
              came by to "talk" never a good sign in the evening. The team has met and
              decided that they feel it is in Javad's best interest to put a trach in. This is a
              hard blow for David and I because up until this time, we thought we have
              flown under the radar. I was told that this episode on Monday was far worse
              that we first thought. (We being David and I). THey were concerned that Javad
              had taken a mental "hit" because his lack of oxygen for so long. I was not
              given this perspective.

              Although I know what is the best decision is, it is very hard. Traching Javad
              represents  a certain sense of failure to me. I feel like I should have caught
              what was going on. I know that I need to let that go and wrap my head around
              things. I am sad. I know that many of you have already been here, made this
              decision and thought it better. I guess I have thought that we would be the
              ones to make it without.

              Javad is still intubated. The medical team doesn't want to extubate him. They
              have indicated that if we don't trach him that they don't feel comfortable caring
              for him. They think the risk is too high. We would have to start over, another
              hospital, new doctors I don't have the energy to start over and don't want to
              have  a DNR. I love Javad with all my heart, cannot imagine him being gone. I
              feelforced into a decision I am not ready to make. Maybe in a year, I will be
              glad, feel good about it, but for now, I don't. I mostly feel sad and kinda empty.

              I am sorry this is such a downer. I  worry that my words will have a negative
              effect on those who are struggling with day to day decisions. I know that in the
              bog picture of life, this is just a small bump.

              As one doctor said too me, "Your journey with Javad is like rowing a boat
              across the ocean...some days it's smooth sailing and everything is good and
              out of the blue comes a huge storm and you tie everything down and hope to
              ride the waves."

              I feel like the storm is huge and I am in the boat alone!

              Shannon



              Yahoo! Messenger NEW - crystal clear PC to PC calling worldwide with voicemail

            • hughesdewy
              Hi Shannon I haven t spoken directly with you before, but have been following your progress regarding Javad. We are so sorry to hear that he s not been well.
              Message 6 of 22 , Jun 11, 2005
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                Hi Shannon

                I haven't spoken directly with you before, but have been following
                your progress regarding Javad. We are so sorry to hear that he's
                not been well. Our thoughts echo those of everyone else who have
                written and we are thinking of you during this difficult phase. I
                only wanted to add that 2 years ago I was communicating with a
                European family who had flown their son out to London (because of
                consistent collapsed left lung) and it was recommended that their
                little boy had trach here. Just like you, and understandably, they
                were in complete turmoil and very distressed - it was the hardest
                decision, because their little boy had managed for a year or more
                trach/vent free. Ultimately, they felt they had no better option
                and saw the positives of having him trached. I'm regularly in touch
                with them now and pleased to say they now think that it was the best
                decision they'd made and their little boy is so much better and
                doing so well - it's great to see photos of him looking so well! I
                can put you in touch with the family if you wish - let me know and
                I'll email them and ask if they would mind corresponding. I know
                that each child is different and every case is different, but I just
                wanted to let you know that there can be positives and that we are
                thinking of you all and especially little Javad at the moment. Take
                care, Wendy and Zak xx
              • alex muendel
                Shannon, My heart goes out to you, especially for feeling forced inro a position you don t agree with. All I can really say is...there are positive aspects to
                Message 7 of 22 , Jun 11, 2005
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                  Shannon,

                  My heart goes out to you, especially for feeling
                  forced inro a position you don't agree with.

                  All I can really say is...there are positive aspects
                  to see wth a trach, one of which is a trach is a
                  reversible procedure should Javad become
                  non-dependant again.

                  all the best in this,
                  alex



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                • lennoxanne
                  Dear Shannon My heart goes out to you at this tough time. For those of us whose boys don t have a trach, it seems like a very scary idea and I sympathise
                  Message 8 of 22 , Jun 11, 2005
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                    Dear Shannon
                    My heart goes out to you at this tough time. For those of us whose
                    boys don't have a trach, it seems like a very scary idea and I
                    sympathise hugely.

                    I have no direct experience to offer, but the one thing in your
                    email that concerned me was that you sounded like you feel you're
                    being coerced. There have been many times where we have felt like
                    medical teams have tried to take decisions away from us and are
                    impatient that we don't 'just go along with them'. But Tom's neo-
                    natologist a mother of 3 herself who has that wonderful attribute of
                    being able to be a true, true partner in the care of a child told
                    me 'unofficially' when Tom passed from her care to paediatrics, to
                    never, ever allow a decision to be made about Tom that we weren't
                    absolutely convinced about too. She also said to beware of medical
                    teams who think they're solely 'in charge' of interpreting the
                    facts. The rarity of this condition means that not enough is known
                    for there to be blanket answers to everything,and that only we are
                    the real experts in our own boys. The thing she said that really
                    stuck with me is 'your job description now is to be Tom's advocate
                    and not everyone will like you for it but you musn't care about that'

                    I don't know if this is at all relevant Shannon but I wish you all
                    the best during these tough days.
                    With love
                    Anne and Tom







                    --- In Myotubular_Myopathy@yahoogroups.com, "Shannon"
                    <smashintwo66@y...> wrote:
                    > Hi everyone,
                    >
                    > Well, I guess I have known this time may come. Last night the
                    pulmonologist
                    > came by to "talk" never a good sign in the evening. The team has
                    met and
                    > decided that they feel it is in Javad's best interest to put a
                    trach in. This is a
                    > hard blow for David and I because up until this time, we thought
                    we have
                    > flown under the radar. I was told that this episode on Monday was
                    far worse
                    > that we first thought. (We being David and I). THey were concerned
                    that Javad
                    > had taken a mental "hit" because his lack of oxygen for so long. I
                    was not
                    > given this perspective.
                    >
                    > Although I know what is the best decision is, it is very hard.
                    Traching Javad
                    > represents a certain sense of failure to me. I feel like I should
                    have caught
                    > what was going on. I know that I need to let that go and wrap my
                    head around
                    > things. I am sad. I know that many of you have already been here,
                    made this
                    > decision and thought it better. I guess I have thought that we
                    would be the
                    > ones to make it without.
                    >
                    > Javad is still intubated. The medical team doesn't want to
                    extubate him. They
                    > have indicated that if we don't trach him that they don't feel
                    comfortable caring
                    > for him. They think the risk is too high. We would have to start
                    over, another
                    > hospital, new doctors I don't have the energy to start over and
                    don't want to
                    > have a DNR. I love Javad with all my heart, cannot imagine him
                    being gone. I
                    > feelforced into a decision I am not ready to make. Maybe in a
                    year, I will be
                    > glad, feel good about it, but for now, I don't. I mostly feel sad
                    and kinda empty.
                    >
                    > I am sorry this is such a downer. I worry that my words will have
                    a negative
                    > effect on those who are struggling with day to day decisions. I
                    know that in the
                    > bog picture of life, this is just a small bump.
                    >
                    > As one doctor said too me, "Your journey with Javad is like rowing
                    a boat
                    > across the ocean...some days it's smooth sailing and everything is
                    good and
                    > out of the blue comes a huge storm and you tie everything down and
                    hope to
                    > ride the waves."
                    >
                    > I feel like the storm is huge and I am in the boat alone!
                    >
                    > Shannon
                  • Shannon
                    Hi everyone...thanks for the notes. Javad is doing really well. I guess someone forgot to tell him that he was having surgery because he hasn t missed a beak.
                    Message 9 of 22 , Jun 20, 2005
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                      Hi everyone...thanks for the notes.

                      Javad is doing really well. I guess someone forgot to tell him that he
                      was having surgery because he hasn't missed a beak. we are giving him
                      time off the vent and are making quick progress. We are hoping to take
                      him outside for a walk today! Ahhh...sunshine!

                      More later!

                      Shannon
                    • ANN MILLER
                      Shannon, Glad to hear Javad is doing well. He is a fighter, he s not going to let something like a little trach get in his way. Give him a big hug for us.
                      Message 10 of 22 , Jun 20, 2005
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                        Shannon,
                         
                        Glad to hear Javad is doing well.  He is a fighter, he's not going to let
                        something like a little trach get in his way.  Give him a big hug for us.
                         
                        Love,
                        Darlene
                         
                        ----- Original Message -----
                        From: Shannon
                        Sent: Monday, June 20, 2005 2:57 PM
                        Subject: [Myotubular_Myopathy] More on Javad

                        Hi everyone...thanks for the notes.

                        Javad is doing really well. I guess someone forgot to tell him that he
                        was having surgery because he hasn't missed a beak. we are giving him
                        time off the vent and are making quick progress. We are hoping to take
                        him outside for a walk today! Ahhh...sunshine!

                        More later!

                        Shannon




                         
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