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More News on Javad

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  • Shannon
    Hi everyone! Javad is doing a bit better. We have been here for three and 1/2 weeks! :( The last two days have been hopeful...stuff breaking up and an x-ray
    Message 1 of 2 , Jul 15, 2004
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      Hi everyone!

      Javad is doing a bit better. We have been here for three and 1/2
      weeks! :(

      The last two days have been hopeful...stuff breaking up and an x-ray
      today that is looking better. He was reintubated on sunday (right
      after I wrote!) and now we are being a little more cautious about
      extubating until he is ready. We are doing trials of CPAP, then will
      extubate to bi-pap, then hopefully home!

      Today we had a bit care conference and, of course, the trach
      conversation was the focus. I listened to all of their reasoning, but
      still feel it is not the right idea for Javad at this time. We are
      not being difficult, but just don't feel that we (or he) is ready for
      that change. Please pray that he continues on his road of improving.

      Nothing else to tell.

      Amanda, I am so sorry that Jacob's eyes are getting worse. I hope the
      pulmonologist can convince the eye dr to do the surgery near home.
      Having the hospital staff know your child is definitely a plus.

      Oh...a final note...the RT that "worked" on Javad in the Er (or
      rather didn't!) was let go. I guess this was the straw that broke the
      camel's back. I must say I was a bit relieved!

      Talk to you soon!

      Shannon
    • Amanda
      Shannon, My heart goes out to you. I know how difficult it must be being at the hospital for so long. I go crazy after just a few days. Anyways, I hope
      Message 2 of 2 , Jul 19, 2004
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        Shannon, My heart goes out to you. I know how difficult it must be
        being at the hospital for so long. I go crazy after just a few
        days. Anyways, I hope Javad is continuing to improve.

        As for the trach, you know your child best and you will make the
        right decision in that regard. It is a hard decision to make; just
        follow your heart.

        It is probably a good thing the RT was let go; hopefully he won't be
        able to treat anyone else like he did Javad.

        Take care, Amanda


        --- In Myotubular_Myopathy@yahoogroups.com, "Shannon"
        <smashintwo66@y...> wrote:
        > Hi everyone!
        >
        > Javad is doing a bit better. We have been here for three and 1/2
        > weeks! :(
        >
        > The last two days have been hopeful...stuff breaking up and an x-
        ray
        > today that is looking better. He was reintubated on sunday (right
        > after I wrote!) and now we are being a little more cautious about
        > extubating until he is ready. We are doing trials of CPAP, then
        will
        > extubate to bi-pap, then hopefully home!
        >
        > Today we had a bit care conference and, of course, the trach
        > conversation was the focus. I listened to all of their reasoning,
        but
        > still feel it is not the right idea for Javad at this time. We are
        > not being difficult, but just don't feel that we (or he) is ready
        for
        > that change. Please pray that he continues on his road of
        improving.
        >
        > Nothing else to tell.
        >
        > Amanda, I am so sorry that Jacob's eyes are getting worse. I hope
        the
        > pulmonologist can convince the eye dr to do the surgery near
        home.
        > Having the hospital staff know your child is definitely a plus.
        >
        > Oh...a final note...the RT that "worked" on Javad in the Er (or
        > rather didn't!) was let go. I guess this was the straw that broke
        the
        > camel's back. I must say I was a bit relieved!
        >
        > Talk to you soon!
        >
        > Shannon
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