Loading ...
Sorry, an error occurred while loading the content.

RE: [Myotubular_Myopathy] Kaylee Update

Expand Messages
  • Anne McAuliffe
    Dear Abbie Our very very best hopes and wishes to you at this time. We ll be thinking of you all and especially dear brave little Kaylee. Anne, Andrew, Sophie
    Message 1 of 12 , Mar 1, 2006
    • 0 Attachment
      Dear Abbie
      Our very very best hopes and wishes to you at this time. We'll be thinking
      of you all and especially dear brave little Kaylee.
      Anne, Andrew, Sophie and Tom Lennox
      London
      UK

      -----Original Message-----
      From: Myotubular_Myopathy@yahoogroups.com
      [mailto:Myotubular_Myopathy@yahoogroups.com] On Behalf Of Abbie Howeth
      Sent: 01 March 2006 01:32
      To: Myotubular_Myopathy@yahoogroups.com
      Subject: [Myotubular_Myopathy] Kaylee Update

      Kaylee was placed in the hospital last week as some of you may have
      read. She is still there, but shortly after I left to come to work,
      they had to move her from the peds unit into the PICU. They decided
      that even though her blood gases were getting better, that she needed
      some support from CPAP so that she does not tire out. She also
      started having runs of V-Tach last night in her sleep. They have
      started her on multiple medicines for that, but they believe now that
      it is just delaying the innevitable. I will keep you all updated as I
      find out more.







      Yahoo! Groups Links
    • DARLENE MILLER
      Hi Abbie Kaylee sounds so so much like Connor. They put a trach in yesterday and my son says he is doing much better. Does Kaylee have a trach? May be the
      Message 2 of 12 , Mar 1, 2006
      • 0 Attachment
        Hi Abbie
         
        Kaylee sounds so so much like Connor.  They put a trach in yesterday and my son says he is doing much better.  Does Kaylee have a trach?  May be the route to go if she doesn't have one.  Talk to your doctor and see what they say.  Our thoughts and prays are with you and Kaylee. 
         
        Take care,
        Darlene
        ----- Original Message -----
        Sent: Tuesday, February 28, 2006 8:31 PM
        Subject: [Myotubular_Myopathy] Kaylee Update

        Kaylee was placed in the hospital last week as some of you may have
        read.  She is still there, but shortly after I left to come to work,
        they had to move her from the peds unit into the PICU.  They decided
        that even though her blood gases were getting better, that she needed
        some support from CPAP so that she does not tire out.  She also
        started having runs of V-Tach last night in her sleep.  They have
        started her on multiple medicines for that, but they believe now that
        it is just delaying the innevitable.  I will keep you all updated as I
        find out more.






         
        Yahoo! Groups Links

        <*> To visit your group on the web, go to:
            http://groupsyahoo.com/group/Myotubular_Myopathy/

        <*> To unsubscribe from this group, send an email to:
            Myotubular_Myopathy-unsubscribe@yahoogroups.com

        <*> Your use of Yahoo! Groups is subject to:
            http://docs.yahoo.com/info/terms/
         


      • kristin cypher
        Our thoughts are with you and Kaylee!! Kristin, Paul and Sebastian Abbie Howeth wrote: Kaylee was placed in the hospital last week
        Message 3 of 12 , Mar 1, 2006
        • 0 Attachment
          Our thoughts are with you and Kaylee!!
           
          Kristin, Paul and Sebastian

          Abbie Howeth <abbiesharrison@...> wrote:
          Kaylee was placed in the hospital last week as some of you may have
          read.  She is still there, but shortly after I left to come to work,
          they had to move her from the peds unit into the PICU.  They decided
          that even though her blood gases were getting better, that she needed
          some support from CPAP so that she does not tire out.  She also
          started having runs of V-Tach last night in her sleep.  They have
          started her on multiple medicines for that, but they believe now that
          it is just delaying the innevitable.  I will keep you all updated as I
          find out more.






          Yahoo! Mail
          Bring photos to life! New PhotoMail makes sharing a breeze.

        • Kimberly Kowalski
          we wish you all great strength right now, especially little kaylee. kim ... __________________________________________________ Do You Yahoo!? Tired of spam?
          Message 4 of 12 , Mar 1, 2006
          • 0 Attachment
            we wish you all great strength right now, especially
            little kaylee.

            kim

            --- Abbie Howeth <abbiesharrison@...> wrote:

            > Kaylee was placed in the hospital last week as some
            > of you may have
            > read. She is still there, but shortly after I left
            > to come to work,
            > they had to move her from the peds unit into the
            > PICU. They decided
            > that even though her blood gases were getting
            > better, that she needed
            > some support from CPAP so that she does not tire
            > out. She also
            > started having runs of V-Tach last night in her
            > sleep. They have
            > started her on multiple medicines for that, but they
            > believe now that
            > it is just delaying the innevitable. I will keep
            > you all updated as I
            > find out more.
            >
            >
            >
            >
            >


            __________________________________________________
            Do You Yahoo!?
            Tired of spam? Yahoo! Mail has the best spam protection around
            http://mail.yahoo.com
          • Abbie harrison
            Hi Darlene, Kaylee does not have a trach, bu tshe has been placed on CPAP at night and that seems to be helping her rest a little easier during the day. Right
            Message 5 of 12 , Mar 3, 2006
            • 0 Attachment
              Hi Darlene,
              Kaylee does not have a trach, bu tshe has been placed on CPAP at night and that seems to be helping her rest a little easier during the day.  Right now the doctor's do not htink she could survive such an invasive procedure, due to her enlarged heart.  We appreciate all of the prayers from everyone and hope to update you soon with good news!
              Thank you,
              Abbie

              DARLENE MILLER <dm4462@...> wrote:
              Hi Abbie
               
              Kaylee sounds so so much like Connor.  They put a trach in yesterday and my son says he is doing much better.  Does Kaylee have a trach?  May be the route to go if she doesn't have one.  Talk to your doctor and see what they say.  Our thoughts and prays are with you and Kaylee. 
               
              Take care,
              Darlene
              ----- Original Message -----
              Sent: Tuesday, February 28, 2006 8:31 PM
              Subject: [Myotubular_Myopathy] Kaylee Update

              Kaylee was placed in the hospital last week as some of you may have
              read.  She is still there, but shortly after I left to come to work,
              they had to move her from the peds unit into the PICU.  They decided
              that even though her blood gases were getting better, that she needed
              some support from CPAP so that she does not tire out.  She also
              started having runs of V-Tach last night in her sleep.  They have
              started her on multiple medicines for that, but they believe now that
              it is just delaying the innevitable.  I will keep you all updated as I
              find out more.






               
              Yahoo! Groups Links

              <*> To visit your group on the web, go to:
                  http://groupsyahoo.com/group/Myotubular_Myopathy/

              <*> To unsubscribe from this group, send an email to:
                  Myotubular_Myopathy-unsubscribe@yahoogroups.com

              <*> Your use of Yahoo! Groups is subject to:
                  http://docs.yahoo.com/info/terms/
               



            • Abbie Howeth
              Kaylee has managed to go the last few days on just CPAP 24/7, but as always the doctors still think she has to have a trach. And as always they also think
              Message 6 of 12 , Nov 29, 2006
              • 0 Attachment
                Kaylee has managed to go the last few days on just CPAP 24/7, but as
                always the doctors still think she has to have a trach. And as
                always they also think that she will definitely die before too long.
                They do not know the actual statistics of each individula type of
                MTM. they seem to believe that she will get progressively worse even
                though she has the recessive and the genetic specialist is the one
                that told us she would get better. It is hard to argue with a doctor
                that has all this knowledge yet I know more about MTM than they do.
                They told the respiratory therapist to put her on a nasal cannula
                with oxygen just to prove to me that she would fail without the
                CPAP. Well she has been on a cannula now for about 20 minutes and
                has not dropped her sats once below 92%. They keep pressuring me to
                have a trach put in and to do it now, but how will we know if she
                needs it or not if they are4 not willing to try other things first.
                She is acting more like herself now which leads me to believe she is
                getting progressively better. They will check her blood gases in
                about thirty minutes to see how well she really is maintaining on
                just the O2 so hopefully that will go well. I just really wish that
                the doctors were more knowledgable on MTM so that they would know not
                to talk like every child is destined to die. Once again I will keep
                everybody posted on her condition and the doctors ignorance of the
                subject. Thank you all for the prayers and thoughts.
                Abbie
              • Amanda Hollingsworth
                Abbie, I can surely feel your frustrations. I ve had several experiences with doctors/medical professionals who just knew that Jacob was going to die soon. (It
                Message 7 of 12 , Nov 29, 2006
                • 0 Attachment
                  Abbie,
                  I can surely feel your frustrations. I've had several experiences with doctors/medical professionals who just knew that Jacob was going to die soon. (It breaks my heart to type that.)
                   
                  Just follow your heart and know that you always have Kalyee's best interest at heart. I hope she is on the road to recovery.
                   
                  Prayers,
                  Amanda

                  Abbie Howeth <abbiesharrison@...> wrote:
                  Kaylee has managed to go the last few days on just CPAP 24/7, but as
                  always the doctors still think she has to have a trach. And as
                  always they also think that she will definitely die before too long.
                  They do not know the actual statistics of each individula type of
                  MTM. they seem to believe that she will get progressively worse even
                  though she has the recessive and the genetic specialist is the one
                  that told us she would get better. It is hard to argue with a doctor
                  that has all this knowledge yet I know more about MTM than they do.
                  They told the respiratory therapist to put her on a nasal cannula
                  with oxygen just to prove to me that she would fail without the
                  CPAP. Well she has been on a cannula now for about 20 minutes and
                  has not dropped her sats once below 92%. They keep pressuring me to
                  have a trach put in and to do it now, but how will we know if she
                  needs it or not if they are4 not willing to try other things first.
                  She is acting more like herself now which leads me to believe she is
                  getting progressively better. They will check her blood gases in
                  about thirty minutes to see how well she really is maintaining on
                  just the O2 so hopefully that will go well. I just really wish that
                  the doctors were more knowledgable on MTM so that they would know not
                  to talk like every child is destined to die. Once again I will keep
                  everybody posted on her condition and the doctors ignorance of the
                  subject. Thank you all for the prayers and thoughts.
                  Abbie




                  Yahoo! Groups Links

                  <*> To visit your group on the web, go to:
                  http://groups.yahoo.com/group/Myotubular_Myopathy/

                  <*> Your email settings:
                  Individual Email | Traditional

                  <*> To change settings online go to:
                  http://groups.yahoo.com/group/Myotubular_Myopathy/join
                  (Yahoo! ID required)

                  <*> To change settings via email:
                  mailto:Myotubular_Myopathy-digest@yahoogroups.com
                  mailto:Myotubular_Myopathy-fullfeatured@yahoogroups.com

                  <*> To unsubscribe from this group, send an email to:
                  Myotubular_Myopathy-unsubscribe@yahoogroups.com

                  <*> Your use of Yahoo! Groups is subject to:
                  http://docs.yahoo.com/info/terms/



                  Access over 1 million songs - Yahoo! Music Unlimited.

                • Wendy
                  Hi Abbie, I m so sorry to hear about your struggles with Kaylee and you re all in our thoughts. I thought you might find this useful - notes taken from a
                  Message 8 of 12 , Nov 29, 2006
                  • 0 Attachment
                  • Scott & Betsy Grant
                    Dear Abbie, How I would like to be standing there with you to speak with those docs myself!! I would really give them some things to chew on. You hang in
                    Message 9 of 12 , Nov 29, 2006
                    • 0 Attachment
                      Dear Abbie,
                      How I would like to be standing there with you to speak with those docs myself!! I would really give them some things to chew on. You hang in there! Tell them to talk to your geneticist and get their facts straight!
                      And tell them you know of many who are not only surviving, but thriving.
                      Sorry if I seem a little too fired up, but I've dealt with docs like this a lot, and there's no reason to put up with their attitudes, and I want to encourage you.
                      Betsy

                       
                      On 11/29/06, Abbie Howeth <abbiesharrison@...> wrote:

                      Kaylee has managed to go the last few days on just CPAP 24/7, but as
                      always the doctors still think she has to have a trach. And as
                      always they also think that she will definitely die before too long.
                      They do not know the actual statistics of each individula type of
                      MTM. they seem to believe that she will get progressively worse even
                      though she has the recessive and the genetic specialist is the one
                      that told us she would get better. It is hard to argue with a doctor
                      that has all this knowledge yet I know more about MTM than they do.
                      They told the respiratory therapist to put her on a nasal cannula
                      with oxygen just to prove to me that she would fail without the
                      CPAP. Well she has been on a cannula now for about 20 minutes and
                      has not dropped her sats once below 92%. They keep pressuring me to
                      have a trach put in and to do it now, but how will we know if she
                      needs it or not if they are4 not willing to try other things first.
                      She is acting more like herself now which leads me to believe she is
                      getting progressively better. They will check her blood gases in
                      about thirty minutes to see how well she really is maintaining on
                      just the O2 so hopefully that will go well. I just really wish that
                      the doctors were more knowledgable on MTM so that they would know not
                      to talk like every child is destined to die. Once again I will keep
                      everybody posted on her condition and the doctors ignorance of the
                      subject. Thank you all for the prayers and thoughts.
                      Abbie


                    • kristin cypher
                      Grrrrr, doctors!! I know they mean well, but really, sometimes their bedside manner is just completely horrible! I hope that Kaylee is doing better. You
                      Message 10 of 12 , Nov 29, 2006
                      • 0 Attachment
                        Grrrrr, doctors!!  I know they mean well, but really, sometimes their 'bedside manner' is just completely horrible!
                         
                        I hope that Kaylee is doing better.  You are such a wonderful advocate for her!!
                         
                        You are in our thoughts,
                        Kristin, Paul & Sebastian

                        Abbie Howeth <abbiesharrison@...> wrote:
                        Kaylee has managed to go the last few days on just CPAP 24/7, but as
                        always the doctors still think she has to have a trach. And as
                        always they also think that she will definitely die before too long.
                        They do not know the actual statistics of each individula type of
                        MTM. they seem to believe that she will get progressively worse even
                        though she has the recessive and the genetic specialist is the one
                        that told us she would get better. It is hard to argue with a doctor
                        that has all this knowledge yet I know more about MTM than they do.
                        They told the respiratory therapist to put her on a nasal cannula
                        with oxygen just to prove to me that she would fail without the
                        CPAP. Well she has been on a cannula now for about 20 minutes and
                        has not dropped her sats once below 92%. They keep pressuring me to
                        have a trach put in and to do it now, but how will we know if she
                        needs it or not if they are4 not willing to try other things first.
                        She is acting more like herself now which leads me to believe she is
                        getting progressively better. They will check her blood gases in
                        about thirty minutes to see how well she really is maintaining on
                        just the O2 so hopefully that will go well. I just really wish that
                        the doctors were more knowledgable on MTM so that they would know not
                        to talk like every child is destined to die. Once again I will keep
                        everybody posted on her condition and the doctors ignorance of the
                        subject. Thank you all for the prayers and thoughts.
                        Abbie



                        Everyone is raving about the all-new Yahoo! Mail beta.

                      • Toni Abram
                        Hello Abbie I was sorry to read that you are having such a hard time with the doctors. Have you seen this from Professor Muntoni at the Hammersmith, here in
                        Message 11 of 12 , Dec 1, 2006
                        • 0 Attachment

                          Hello Abbie

                           



                          (Message over 64 KB, truncated)

                        Your message has been successfully submitted and would be delivered to recipients shortly.