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Worried about Kaden ..

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  • Sheallyn
    hey all just need to vent a little here. Kaden has come down with a paraflu over the past week. We have been in isolation for almost a month now due to him
    Message 1 of 10 , Feb 7, 2008
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      hey all just need to vent a little here. Kaden has come down with a
      paraflu over the past week. We have been in isolation for almost a
      month now due to him getting VRE from others on the unit and now
      this ..

      He went from 3 hour trials off his pap 1 back on and was doing
      great, now they take him off for 15 minutes and he is de satting
      into the low 80's. They have also went from 1 litre of 02 in his pap
      up to 9 litres today. Have any of your kids had this flu? I know
      it's just a common cold for most but it's really hitting him hard
      and I'm quite worried ..

      please say a little something for Kaden if you can, my worst fear is
      that this will turn into a pneumonia and he's barely able to fight a
      cold as it stands ..

      will keep you all posted!


      Sheallyn & Kaden James
    • DARLENE MILLER
      Hi Sheallyn, Not sure what VRE is. Are you talking about RSV? Kyle had it a couple years ago. He was out of school for 6 weeks. We were able to keep him
      Message 2 of 10 , Feb 7, 2008
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        Hi Sheallyn,
         
        Not sure what VRE is.  Are you talking about RSV?  Kyle had it a couple years
        ago.  He was out of school for 6 weeks.  We were able to keep him out of the
        hospital and at home during this time.  No one was allowed in the house for the
        first couple of weeks.  He did have an increase of sucreations that required
        us to suction him quite alot.  He ran a fever off and on during this time and 
        needed the vent with oxygen.    Took him almost a month to get back to his old
        self. 
         
        Kyle now has a virus.  He has been fighting it off and on for the past two weeks.
        He ended up in the hospital for 24 hours for testing.  All the test they did at the
        doctors and our local hospital came back negative.  So we went to Children's
        all the test there also came back negative, so they are calling it a virus.  He
        has been out of school this past week because of it.  It hasn't gotten him down,
        just needing the vent and ocassional oxygen when he has a fever.
         
        We hope Kaden feels better soon.  We will keep him in our prayers.
         
        Take care
        Darlene
         
         
        ----- Original Message -----
        From: Sheallyn
        Sent: Thursday, February 07, 2008 3:16 PM
        Subject: [Myotubular_Myopathy] Worried about Kaden ..

        hey all just need to vent a little here. Kaden has come down with a
        paraflu over the past week. We have been in isolation for almost a
        month now due to him getting VRE from others on the unit and now
        this ..

        He went from 3 hour trials off his pap 1 back on and was doing
        great, now they take him off for 15 minutes and he is de satting
        into the low 80's. They have also went from 1 litre of 02 in his pap
        up to 9 litres today. Have any of your kids had this flu? I know
        it's just a common cold for most but it's really hitting him hard
        and I'm quite worried ..

        please say a little something for Kaden if you can, my worst fear is
        that this will turn into a pneumonia and he's barely able to fight a
        cold as it stands ..

        will keep you all posted!

        Sheallyn & Kaden James

      • Sheallyn
        hi Darlene, VRE is a bacteria that grows in the bum, we all have it but in Kaden s case he shows symptoms due to the fact that he has other issues going on. In
        Message 3 of 10 , Feb 7, 2008
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          hi Darlene, VRE is a bacteria that grows in the bum, we all have it
          but in Kaden's case he shows symptoms due to the fact that he has
          other issues going on. In an otherwise "healthy" person you would
          probably never know. It really isn't anything that will bother him
          but he needs 3 negative swabs before he can come out of ISO.

          The paraflu that he got, which they think started around Saturday
          has now done some damage to Kaden. We had an x ray done and his left
          lung has collapsed and he also has viral pneumonia now as well. So
          much for the docs telling me it is just a common cold.

          The pressures on his pap are 26 over 10 so we have one sick boy on
          our hands and the machine seems to be doing most of the breathing
          for him. We took Kaden off of his pap to give him some ventolin and
          before we could count to 5 his stats dropped to 72.

          Again, I have never heard of the paraful and honestly, I have never
          seen Kaden this sick before, he cannot breathe and cannot stop
          coughing. I had a doctor tonight who, in the same breath told me he
          think Kaden will pull through as he is such a fighter then on the
          same note told me to make any DNR plans I may have or change
          anything I'd like too just in case ... I am exhausted, my son is in
          pain and I cannot do a damned thing for him ... I know this is all
          part of XMTM but that is not making me worry less or feel any more
          comforted ...


          Sorry all but I really needed to vent some of that out... will
          update when I can get to a computer next..

          tc all


          Sheallyn & Kaden James
        • Kami Hutchings
          hi my name is kami and i lost my son on may17 and would like to talk more with you if your up for it. take care an d be strong! :) Sheallyn
          Message 4 of 10 , Jul 1 6:18 PM
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            hi my name is kami and i lost my son on may17 and would like to talk more with you if your up for it. take care an d be strong! :)

            Sheallyn <sheallyn73@...> wrote:
            hey all just need to vent a little here. Kaden has come down with a
            paraflu over the past week. We have been in isolation for almost a
            month now due to him getting VRE from others on the unit and now
            this ..

            He went from 3 hour trials off his pap 1 back on and was doing
            great, now they take him off for 15 minutes and he is de satting
            into the low 80's. They have also went from 1 litre of 02 in his pap
            up to 9 litres today. Have any of your kids had this flu? I know
            it's just a common cold for most but it's really hitting him hard
            and I'm quite worried ..

            please say a little something for Kaden if you can, my worst fear is
            that this will turn into a pneumonia and he's barely able to fight a
            cold as it stands ..

            will keep you all posted!

            Sheallyn & Kaden James


          • Sheallyn
            Hi Kami, you must have recently joined I am guessing, don t think I have seen your nick here before :
            Message 5 of 10 , Jul 2 10:49 AM
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              Hi Kami, you must have recently joined I am guessing, don't think I
              have seen your nick here before :<)


              I'd be happy to chat with ya anytime you'd like! You can get a hold of
              me at sheallyn73@...


              take care!
            • Kami Hutchings
              Hi Sheallyn this is Kami i recently e mailed you. I put pictures of our son on careplace. im not so good at all this and dealing with emotions! I read alot of
              Message 6 of 10 , Jul 3 5:00 PM
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                Hi Sheallyn this is Kami i recently e mailed you. I put pictures of our son on careplace. im not so good at all this and dealing with emotions! I read alot of what was going n with you and yur lil guy. Its so hard im only 23 yrs old and feel double that! Evrything came so fast and gone within a half a year. i would like to know how you deal with the loss:( I joines back in january and got so busy doing 24 hour care for kaleb i tried to keep in touch and update things on carelace. but i would like to visit with you!:)                            
                                                                                                                       / Kami (kalebs mom)

                ----- Original Message ----
                From: Sheallyn <sheallyn73@...>
                To: Myotubular_Myopathy@yahoogroups.com
                Sent: Wednesday, July 2, 2008 11:49:37 AM
                Subject: [Myotubular_Myopathy] Re: Worried about Kaden ..

                Hi Kami, you must have recently joined I am guessing, don't think I
                have seen your nick here before :<)

                I'd be happy to chat with ya anytime you'd like! You can get a hold of
                me at sheallyn73@yahoo. com

                take care!


              • Kami Hutchings
                Hi this is kami and i wanted to know about your lil guy! I lost my lil kaleb on May 17, 2008. i woukd love to talk with you! Its hard to talk about it but i
                Message 7 of 10 , Jul 4 8:28 AM
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                  Hi this is kami and i wanted to know about your lil guy! I lost my lil kaleb on May 17, 2008. i woukd love to talk with you! Its hard to talk about it but i dunno anyone that has the loss. thanks for emaling me back. I joined back in january but could not keep updated with all the nursing care! I would love to here back from you on your experience! Thanks Much  /Kami

                  Sheallyn <sheallyn73@...> wrote:
                  Hi Kami, you must have recently joined I am guessing, don't think I
                  have seen your nick here before :<)

                  I'd be happy to chat with ya anytime you'd like! You can get a hold of
                  me at sheallyn73@yahoo. com

                  take care!


                • Shannon
                  Kami, I am so sorry that we were not able to be supportive of you during this spring. I am also sorry to hear about the loss of your son. Sadly, we, as a
                  Message 8 of 10 , Jul 5 12:51 PM
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                    Kami,

                    I am so sorry that we were not able to be supportive of you during
                    this spring. I am also sorry to hear about the loss of your son.
                    Sadly, we, as a group, have lost many of our young warriors. The one
                    incredible thing about this group is that we bind together through
                    good and bad. We would love to hear about your son. Let us know what
                    we can do to be supportive of you as well...

                    Shannon Mashinchi
                  • Sheallyn
                    Hi Kami, thought I would let you know that I did not receive an email from you as of yet, I ve checked a few times now. As for losing a child I have to be
                    Message 9 of 10 , Jul 5 1:51 PM
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                      Hi Kami, thought I would let you know that I did not receive an
                      email from you as of yet, I've checked a few times now.

                      As for losing a child I have to be honest, I really don't know what
                      to say .... This is as new for me as it is for you really ... As for
                      dealing with it, I think we all need to find our own way. I
                      personally make a point of thinking of my son each day, something
                      funny he did like the way he would dance or something new he
                      accomplished and I'll smile.

                      I have to say though, it's hard for me to give advice on this topic
                      as I do not have years behind me. Kaden just passed away in Feburary
                      of this year, the wounds are still very fresh ... What I do know is
                      that whether we had 4 months or 12 years with our little ones, a
                      child lost is a child lost and there is a void in your heart that
                      nothing but time will fix .. and even then ..... I'm not so sure.

                      We have Kaden here at home with us in an urn, surrounded by his
                      pictures and a few trinkets he use to play with. I find this very
                      comforting as a mum. It helps me stay connected if that makes sense.

                      I do offer you my deepest sympathies on losing your son and am more
                      than happy to chat with you anytime you'd like.

                      take care
                    • Richard and Connie Guinn
                      Hi Kami, My name is Connie, and I have also lost my son. I am available to talk to you, if you d like. Please email me at kookla_g@yahoo.com Where do you
                      Message 10 of 10 , Jul 8 2:15 PM
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                        Hi Kami,

                        My name is Connie, and I have also lost my son. I am available to
                        talk to you, if you'd like. Please email me at kookla_g@...
                        Where do you live? I am very sorry to hear about your son's passing-
                        it is a hard thing to go through.

                        Hugs,
                        Connie

                        --- In Myotubular_Myopathy@yahoogroups.com, Kami Hutchings
                        <khutchings23@...> wrote:
                        >
                        > Hi this is kami and i wanted to know about your lil guy! I lost my
                        lil kaleb on May 17, 2008. i woukd love to talk with you! Its hard to
                        talk about it but i dunno anyone that has the loss. thanks for
                        emaling me back. I joined back in january but could not keep updated
                        with all the nursing care! I would love to here back from you on your
                        experience! Thanks Much /Kami
                        >
                        > Sheallyn <sheallyn73@...> wrote: Hi Kami, you must have
                        recently joined I am guessing, don't think I
                        > have seen your nick here before :<)
                        >
                        > I'd be happy to chat with ya anytime you'd like! You can get a hold
                        of
                        > me at sheallyn73@...
                        >
                        > take care!
                        >
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