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A victory for Kaylee

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  • Abbie Howeth
    After hours of duking it out with the doctors, I have managed to prove my point and get my way. Kaylee is now off of the CPAP during the day and holds her
    Message 1 of 3 , Nov 29, 2006
      After hours of duking it out with the doctors, I have managed to prove
      my point and get my way. Kaylee is now off of the CPAP during the day
      and holds her sats well without O2 except when napping. Her lungs
      still look junky but I managed to convince the doctor not to discharge
      her, as she really is not ready. They are going to observe her
      overnight and then have her transferred to the regular floor tomorrow.
      They will watch and continue her treatment there for a few days and if
      that does not help then we will consider other options. But for now,
      Kaylee is happy and feeling well. It is not often when you fight to
      keep your child in the hospital but sometimes they just need it.
      Hopefully we will continue to show the doctors that just because they
      have years of training does not mean they know everything. I hate that
      she had to spend her birthday in the hospital, but if it helps her get
      to her next birthday then it was well worth it.
    • DARLENE MILLER
      Hi Abbie, Yah! Glad to hear Kaylee is doing better. We have gone this battle several times with Kyle and Connor. And now I;m doing it with my Dad. I had a
      Message 2 of 3 , Nov 30, 2006
        Hi Abbie,
        Yah!  Glad to hear Kaylee is doing better.  We have gone
        this battle several times with Kyle and Connor.  And now
        I;m doing it with my Dad.  I had a run in with my Dad's dr.
        who said "how dear you question my expertise, I have
        23 year's of experience and know what I'm doing", and
        my answer was your not GOD, everyone can make
        mistakes.  Anyway, I'm glad you held to what you were
        feeling.  That seems to be the best way to handle
        our kids.  Hope she continues to improve and is home soon.
        Tell Kaylee Happy Birthday for us and give her a great big
        hug.
         
        Take care
        Darlene
        ----- Original Message -----
        Sent: Wednesday, November 29, 2006 11:00 PM
        Subject: [Myotubular_Myopathy] A victory for Kaylee

        After hours of duking it out with the doctors, I have managed to prove
        my point and get my way. Kaylee is now off of the CPAP during the day
        and holds her sats well without O2 except when napping. Her lungs
        still look junky but I managed to convince the doctor not to discharge
        her, as she really is not ready. They are going to observe her
        overnight and then have her transferred to the regular floor tomorrow.
        They will watch and continue her treatment there for a few days and if
        that does not help then we will consider other options. But for now,
        Kaylee is happy and feeling well. It is not often when you fight to
        keep your child in the hospital but sometimes they just need it.
        Hopefully we will continue to show the doctors that just because they
        have years of training does not mean they know everything. I hate that
        she had to spend her birthday in the hospital, but if it helps her get
        to her next birthday then it was well worth it.

      • Shannon Mashinchi
        I remember two years ago when the doctors kept insisting that we trach Javad. We managed to get out without one at that time, unfortunately, we were unable to
        Message 3 of 3 , Nov 30, 2006
          I remember two years ago when the doctors kept insisting that we trach Javad. We managed
          to get out without one at that time, unfortunately, we were unable to escape without one
          two summers ago. Although I would not say Javad has necessarily been healthier since his
          trach, I can say that we have been able to keep him home because we now have the hospital
          at home since he has been trached. It is definitely one of those 6 of one half dozen of
          another moments!

          I hope that Kaylee continues to improve.

          Much love,

          Shannon



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