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over night sleep study !!!!!!

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  • rachel_wrigley
    just wanted to ask whats the normal rage for sats at night regan just had done i put the machine on 2 nights running and it never got over 92 and the lowest
    Message 1 of 20 , Aug 23, 2007
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      just wanted to ask whats the normal rage for sats at night regan just
      had done i put the machine on 2 nights running and it never got over 92
      and the lowest was 89 is this normal i have the machine till tuesday do
      i try again another night or should i leave and tell the nurses when
      there pick up the machine i hope there send the results to doc A S A P
      thanks every one for reading it
      take care all
      Rachel

      i just wish i had a pulse oxymeter of my own hospital would let me have
      one ive had to buy one from ebay which is a small finger one !!
    • Dana
      Hi Rachel!! From what I understand (and I could be wrong) every child has their own normal . Everytime Cason sees a new Dr they ask me what Cason s normal O2
      Message 2 of 20 , Aug 23, 2007
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        Hi Rachel!! From what I understand (and I could be wrong) every child
        has their own "normal". Everytime Cason sees a new Dr they ask me what
        Cason's normal O2 range is. Cason's normal is between 97-100%. Of
        course when he is sick it is alot lower. Cason's Pulmonologist wants to
        be notified when his O2 rates hang out lower than 96%. I know some
        kids' normal O2's are between 94-96%. I would just wait and see what
        the Dr says. Good luck!! Dana and Cason

        --- In Myotubular_Myopathy@yahoogroups.com, "rachel_wrigley"
        <rachel_wrigley@...> wrote:
        >
        > just wanted to ask whats the normal rage for sats at night regan just
        > had done i put the machine on 2 nights running and it never got over
        92
        > and the lowest was 89 is this normal i have the machine till tuesday
        do
        > i try again another night or should i leave and tell the nurses when
        > there pick up the machine i hope there send the results to doc A S A
        P
        > thanks every one for reading it
        > take care all
        > Rachel
        >
        > i just wish i had a pulse oxymeter of my own hospital would let me
        have
        > one ive had to buy one from ebay which is a small finger one !!
        >
      • Spampinato, Rosemary
        My experience is that a NICU s acceptable low is 92 and some outpatient specialist agree low = 88. However, I agree with Dana. Each kiddo has their own
        Message 3 of 20 , Aug 24, 2007
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          My experience is that a NICU's acceptable low is 92 and some outpatient specialist agree low = 88. However, I agree with Dana. Each kiddo has their own baseline. I wouldn't be comfortable with not getting over 92 though.  I think it is imperative that you have a pulse oximeter to monitor yourself. Please tell me why you are unable to get one? I may have missed this explaination to the group. And, where do you live? I understand insurance and may be able to help.


          From: Myotubular_Myopathy@yahoogroups.com [mailto:Myotubular_Myopathy@yahoogroups.com] On Behalf Of Dana
          Sent: Friday, August 24, 2007 1:09 AM
          To: Myotubular_Myopathy@yahoogroups.com
          Subject: [Myotubular_Myopathy] Re: over night sleep study !!!!!!

          Hi Rachel!! From what I understand (and I could be wrong) every child
          has their own "normal". Everytime Cason sees a new Dr they ask me what
          Cason's normal O2 range is. Cason's normal is between 97-100%. Of
          course when he is sick it is alot lower. Cason's Pulmonologist wants to
          be notified when his O2 rates hang out lower than 96%. I know some
          kids' normal O2's are between 94-96%. I would just wait and see what
          the Dr says. Good luck!! Dana and Cason

          --- In Myotubular_Myopathy @yahoogroups. com, "rachel_wrigley"
          <rachel_wrigley@ ...> wrote:

          >
          > just
          wanted to ask whats the normal rage for sats at night regan just
          > had
          done i put the machine on 2 nights running and it never got over
          92
          >
          and the lowest was 89 is this normal i have the machine till tuesday
          do
          > i try again another night or should i leave and tell the nurses when
          > there pick up the machine i hope there send the results to doc A S A
          P
          > thanks every one for reading it
          > take care all
          >
          Rachel
          >
          > i just wish i had a pulse oxymeter of my own hospital
          would let me
          have
          > one ive had to buy one from ebay which is a small
          finger one !!
          >

        • rachel wriglry
          hi im in the uk we have asked for a pulse oxymeter when my other marconi was very ill we nearly lost him a few times and wanted one at home the hospital
          Message 4 of 20 , Aug 24, 2007
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            hi
            im in the uk
            we have asked for a pulse oxymeter when my other marconi was very ill we nearly lost him a few times and wanted one at home the hospital refused us one i even thought of writing to my local goverment for help but it would be a long draw out affair we also asked for a little bottle oxygen for the jorney the  to hospital we too was refused that we only got a suction machine after us kicking up a fuss we feel so let down by the hospital

            "Spampinato, Rosemary" <spampinator@...> wrote:
            My experience is that a NICU's acceptable low is 92 and some outpatient specialist agree low = 88. However, I agree with Dana. Each kiddo has their own baseline. I wouldn't be comfortable with not getting over 92 though.  I think it is imperative that you have a pulse oximeter to monitor yourself. Please tell me why you are unable to get one? I may have missed this explaination to the group. And, where do you live? I understand insurance and may be able to help.


            From: Myotubular_Myopathy @yahoogroups. com [mailto:Myotubular_ Myopathy@ yahoogroups. com] On Behalf Of Dana
            Sent: Friday, August 24, 2007 1:09 AM
            To: Myotubular_Myopathy @yahoogroups. com
            Subject: [Myotubular_ Myopathy] Re: over night sleep study !!!!!!

            Hi Rachel!! From what I understand (and I could be wrong) every child
            has their own "normal". Everytime Cason sees a new Dr they ask me what
            Cason's normal O2 range is. Cason's normal is between 97-100%. Of
            course when he is sick it is alot lower. Cason's Pulmonologist wants to
            be notified when his O2 rates hang out lower than 96%. I know some
            kids' normal O2's are between 94-96%. I would just wait and see what
            the Dr says. Good luck!! Dana and Cason

            --- In Myotubular_Myopathy @yahoogroups. com, "rachel_wrigley"
            <rachel_wrigley@ ...> wrote:
            >
            > just wanted to ask whats the normal rage for sats at night regan just
            > had done i put the machine on 2 nights running and it never got over
            92
            > and the lowest was 89 is this normal i have the machine till tuesday
            do
            > i try again another night or should i leave and tell the nurses when
            > there pick up the machine i hope there send the results to doc A S A
            P
            > thanks every one for reading it
            > take care all
            > Rachel
            >
            > i just wish i had a pulse oxymeter of my own hospital would let me
            have
            > one ive had to buy one from ebay which is a small finger one !!
            >



            Yahoo! Answers - Get better answers from someone who knows. Try it now.

          • Spampinato, Rosemary
            If you d like to talk off line you can reach me now at spampinator@ccbh.com . My name is Rosemary. ________________________________ From:
            Message 5 of 20 , Aug 24, 2007
            • 0 Attachment
               
              If you'd like to talk off line you can reach me now at spampinator@... . My name is Rosemary.

              From: Myotubular_Myopathy@yahoogroups.com [mailto:Myotubular_Myopathy@yahoogroups.com] On Behalf Of rachel wriglry
              Sent: Friday, August 24, 2007 3:33 PM
              To: Myotubular_Myopathy@yahoogroups.com
              Subject: RE: [Myotubular_Myopathy] Re: over night sleep study !!!!!!

              hi
              im in the uk
              we have asked for a pulse oxymeter when my other marconi was very ill we nearly lost him a few times and wanted one at home the hospital refused us one i even thought of writing to my local goverment for help but it would be a long draw out affair we also asked for a little bottle oxygen for the jorney the  to hospital we too was refused that we only got a suction machine after us kicking up a fuss we feel so let down by the hospital

              "Spampinato, Rosemary" <spampinator@ ccbh.com> wrote:
              My experience is that a NICU's acceptable low is 92 and some outpatient specialist agree low = 88. However, I agree with Dana. Each kiddo has their own baseline. I wouldn't be comfortable with not getting over 92 though.  I think it is imperative that you have a pulse oximeter to monitor yourself. Please tell me why you are unable to get one? I may have missed this explaination to the group. And, where do you live? I understand insurance and may be able to help.


              From: Myotubular_Myopathy @yahoogroups. com [mailto:Myotubular_ Myopathy@ yahoogroups. com] On Behalf Of Dana
              Sent: Friday, August 24, 2007 1:09 AM
              To: Myotubular_Myopathy @yahoogroups. com
              Subject: [Myotubular_ Myopathy] Re: over night sleep study !!!!!!

              Hi Rachel!! From what I understand (and I could be wrong) every child
              has their own "normal". Everytime Cason sees a new Dr they ask me what
              Cason's normal O2 range is. Cason's normal is between 97-100%. Of
              course when he is sick it is alot lower. Cason's Pulmonologist wants to
              be notified when his O2 rates hang out lower than 96%. I know some
              kids' normal O2's are between 94-96%. I would just wait and see what
              the Dr says. Good luck!! Dana and Cason

              --- In Myotubular_Myopathy @yahoogroups. com, "rachel_wrigley"
              <rachel_wrigley@ ...> wrote:
              >
              > just wanted to ask whats the normal rage for sats at night regan just
              > had done i put the machine on 2 nights running and it never got over
              92
              > and the lowest was 89 is this normal i have the machine till tuesday
              do
              > i try again another night or should i leave and tell the nurses when
              > there pick up the machine i hope there send the results to doc A S A
              P
              > thanks every one for reading it
              > take care all
              > Rachel
              >
              > i just wish i had a pulse oxymeter of my own hospital would let me
              have
              > one ive had to buy one from ebay which is a small finger one !!
              >



              Yahoo! Answers - Get better answers from someone who knows. Try it now.

            • Clair Bell
              Hi Rachel I m in the uk too, I live in Durham. Really sorry to hear that your having trouble getting a pulse oxymeter. Have you a specialist health visitor
              Message 6 of 20 , Aug 25, 2007
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                Hi Rachel

                I'm in the uk too, I live in Durham.

                Really sorry to hear that your having trouble getting a pulse
                oxymeter. Have you a specialist health visitor that comes to see
                your boys? As ours comes to see Daniel every couple of weeks, they
                are part of the Outreach Team and they have provided our oxymeter we
                even had it before Daniel left Neonatal, they also provided me with 2
                suction machines one for upstairs and one down stairs and they
                deliver all my suction tubes etc. I also asked to have some oxygen
                at home for emergencies only as Daniel is always in air and his
                consultant authorised this then Daniel's GP organised all this for us
                too. So i now have a 10 ltr upstairs and also a 2 ltr travel size.
                You need to start pushing for all you need. Do you use an Apnea
                Alarm then? Oxymeters are expensive to buy as I bought a portable
                oxymeter which was £750. Bless you, I can't believe your having to
                fight for one when they are such an important bit of equipment for
                our boys. I only use Daniel's when he's asleep or if I think he's
                not too well.
                Anyway, good luck and fight your corner.

                Clair xxx

                --- In Myotubular_Myopathy@yahoogroups.com, rachel wriglry
                <rachel_wrigley@...> wrote:
                >
                > hi
                > im in the uk
                > we have asked for a pulse oxymeter when my other marconi was very
                ill we nearly lost him a few times and wanted one at home the
                hospital refused us one i even thought of writing to my local
                goverment for help but it would be a long draw out affair we also
                asked for a little bottle oxygen for the jorney the to hospital we
                too was refused that we only got a suction machine after us kicking
                up a fuss we feel so let down by the hospital
                >
                > "Spampinato, Rosemary" <spampinator@...> wrote:
                > My experience is that a NICU's acceptable low is 92 and
                some outpatient specialist agree low = 88. However, I agree with
                Dana. Each kiddo has their own baseline. I wouldn't be comfortable
                with not getting over 92 though. I think it is imperative that you
                have a pulse oximeter to monitor yourself. Please tell me why you are
                unable to get one? I may have missed this explaination to the group.
                And, where do you live? I understand insurance and may be able to
                help.
                >
                >
                > ---------------------------------
                > From: Myotubular_Myopathy@yahoogroups.com
                [mailto:Myotubular_Myopathy@yahoogroups.com] On Behalf Of Dana
                > Sent: Friday, August 24, 2007 1:09 AM
                > To: Myotubular_Myopathy@yahoogroups.com
                > Subject: [Myotubular_Myopathy] Re: over night sleep study !!!!!!
                >
                >
                >
                > Hi Rachel!! From what I understand (and I could be wrong) every
                child
                > has their own "normal". Everytime Cason sees a new Dr they ask me
                what
                > Cason's normal O2 range is. Cason's normal is between 97-100%. Of
                > course when he is sick it is alot lower. Cason's Pulmonologist
                wants to
                > be notified when his O2 rates hang out lower than 96%. I know some
                > kids' normal O2's are between 94-96%. I would just wait and see
                what
                > the Dr says. Good luck!! Dana and Cason
                >
                > --- In Myotubular_Myopathy@yahoogroups.com, "rachel_wrigley"
                > <rachel_wrigley@> wrote:
                > >
                > > just wanted to ask whats the normal rage for sats at night regan
                just
                > > had done i put the machine on 2 nights running and it never got
                over
                > 92
                > > and the lowest was 89 is this normal i have the machine till
                tuesday
                > do
                > > i try again another night or should i leave and tell the nurses
                when
                > > there pick up the machine i hope there send the results to doc A
                S A
                > P
                > > thanks every one for reading it
                > > take care all
                > > Rachel
                > >
                > > i just wish i had a pulse oxymeter of my own hospital would let
                me
                > have
                > > one ive had to buy one from ebay which is a small finger one !!
                > >
                >
                >
                >
                >
                >
                >
                >
                >
                > ---------------------------------
                > Yahoo! Answers - Get better answers from someone who knows. Tryit
                now.
                >
              • rachel wriglry
                hi clair thanks for your advice we do have a nurse that comes out every mth to check on my youngest son as hes fed by ng tube and there come out to weight him
                Message 7 of 20 , Aug 25, 2007
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                  hi clair
                  thanks for your advice we do have a nurse that comes out every mth to check on my youngest son as hes fed by ng tube and there come out to weight him to make sure hes putting weight on when we brought up about the oxygen the hospital said if he needed oxygen then he should be in hospital and with the oxymeter there said no that there dont give them out and that even kids with trachs dont get them we havent even got a apnea moniter we had a keyworker but she wasnt much help she dosent come out anymore she was supose to help us get the things we needed for our boys i have 3 children 2 have suspected mtm it took us nearly a year to get a suction machine im not sure what route to go now ive even contacted our local mp to see if he could help me get the things i need but it will be a long draw out affair etc but i feel its a must i have theses things for my sons it took us 4mths to get a chair for marconi we had to wait for the permission of the hospital to see if we could have it we have even asked the docs to sign a form we made saying that we have asked for the things etc and if anything was to happen to my boys then there carnt say we didnt ask for them the docs wouldnt sign it!!! what a joke !!are u going to the confrence in london?
                  ive thought of asking for a cough assisit but i know ill be turned down flat
                  anyway ive gone on eough now lol
                  hope everyones good take care
                  Rachel&boys

                  Clair Bell <clair.bell@...> wrote:
                  Hi Rachel

                  I'm in the uk too, I live in Durham.

                  Really sorry to hear that your having trouble getting a pulse
                  oxymeter. Have you a specialist health visitor that comes to see
                  your boys? As ours comes to see Daniel every couple of weeks, they
                  are part of the Outreach Team and they have provided our oxymeter we
                  even had it before Daniel left Neonatal, they also provided me with 2
                  suction machines one for upstairs and one down stairs and they
                  deliver all my suction tubes etc. I also asked to have some oxygen
                  at home for emergencies only as Daniel is always in air and his
                  consultant authorised this then Daniel's GP organised all this for us
                  too. So i now have a 10 ltr upstairs and also a 2 ltr travel size.
                  You need to start pushing for all you need. Do you use an Apnea
                  Alarm then? Oxymeters are expensive to buy as I bought a portable
                  oxymeter which was £750. Bless you, I can't believe your having to
                  fight for one when they are such an important bit of equipment for
                  our boys. I only use Daniel's when he's asleep or if I think he's
                  not too well.
                  Anyway, good luck and fight your corner.

                  Clair xxx

                  --- In Myotubular_Myopathy @yahoogroups. com, rachel wriglry
                  <rachel_wrigley@ ...> wrote:
                  >
                  > hi
                  > im in the uk
                  > we have asked for a pulse oxymeter when my other marconi was very
                  ill we nearly lost him a few times and wanted one at home the
                  hospital refused us one i even thought of writing to my local
                  goverment for help but it would be a long draw out affair we also
                  asked for a little bottle oxygen for the jorney the to hospital we
                  too was refused that we only got a suction machine after us kicking
                  up a fuss we feel so let down by the hospital
                  >
                  > "Spampinato, Rosemary" <spampinator@ ...> wrote:
                  > My experience is that a NICU's acceptable low is 92 and
                  some outpatient specialist agree low = 88. However, I agree with
                  Dana. Each kiddo has their own baseline. I wouldn't be comfortable
                  with not getting over 92 though. I think it is imperative that you
                  have a pulse oximeter to monitor yourself. Please tell me why you are
                  unable to get one? I may have missed this explaination to the group.
                  And, where do you live? I understand insurance and may be able to
                  help.
                  >
                  >
                  > ------------ --------- --------- ---
                  > From: Myotubular_Myopathy @yahoogroups. com
                  [mailto:Myotubular_Myopathy @yahoogroups. com] On Behalf Of Dana
                  > Sent: Friday, August 24, 2007 1:09 AM
                  > To: Myotubular_Myopathy @yahoogroups. com
                  > Subject: [Myotubular_ Myopathy] Re: over night sleep study !!!!!!
                  >
                  >
                  >
                  > Hi Rachel!! From what I understand (and I could be wrong) every
                  child
                  > has their own "normal". Everytime Cason sees a new Dr they ask me
                  what
                  > Cason's normal O2 range is. Cason's normal is between 97-100%. Of
                  > course when he is sick it is alot lower. Cason's Pulmonologist
                  wants to
                  > be notified when his O2 rates hang out lower than 96%. I know some
                  > kids' normal O2's are between 94-96%. I would just wait and see
                  what
                  > the Dr says. Good luck!! Dana and Cason
                  >
                  > --- In Myotubular_Myopathy @yahoogroups. com, "rachel_wrigley"
                  > <rachel_wrigley@ > wrote:
                  > >
                  > > just wanted to ask whats the normal rage for sats at night regan
                  just
                  > > had done i put the machine on 2 nights running and it never got
                  over
                  > 92
                  > > and the lowest was 89 is this normal i have the machine till
                  tuesday
                  > do
                  > > i try again another night or should i leave and tell the nurses
                  when
                  > > there pick up the machine i hope there send the results to doc A
                  S A
                  > P
                  > > thanks every one for reading it
                  > > take care all
                  > > Rachel
                  > >
                  > > i just wish i had a pulse oxymeter of my own hospital would let
                  me
                  > have
                  > > one ive had to buy one from ebay which is a small finger one !!
                  > >
                  >
                  >
                  >
                  >
                  >
                  >
                  >
                  >
                  > ------------ --------- --------- ---
                  > Yahoo! Answers - Get better answers from someone who knows. Tryit
                  now.
                  >



                  For ideas on reducing your carbon footprint visit Yahoo! For Good this month.

                • Clair Bell
                  Hi Rachel This must be awful for you fighting for all this equipment, as if you haven t got enough on then this on top. I can t believe we are in the same
                  Message 8 of 20 , Aug 26, 2007
                  • 0 Attachment
                    Hi Rachel

                    This must be awful for you fighting for all this equipment, as if you
                    haven't got enough on then this on top. I can't believe we are in
                    the same country your fighting and we seem to be getting everything
                    provided. Where abouts in the UK are you? Daniel's physio got him a
                    Sunbeam Chair and has just recently been fitted for a B Chair. As
                    for the Oxygen, the hospital said the same to me at first that if he
                    required oxygen then he should be in hospital, so I explained all I
                    wanted it for was emergencies while waiting for the ambulance as his
                    sats had dropped quite a bit. So the last twice i've had to call an
                    ambulance we've had the oxygen and it's been alot better and I feel
                    alot better having it now. We have just recently come out of
                    hospital again, we have been in and out over the past few weeks with
                    chest infection but all recovered now, fingers crossed. It was
                    mainly aspiration which had caused this but he also had tonsillitis
                    as well...bless him.

                    I would check in your area about a Specialist Health Visitor as they
                    can be very useful. Also do you have a Specialist Nursery Nurse?
                    Ours comes in twice a week for 2 hrs and she's great, she entertains
                    him and plays with him while I can get on with stuff in the house, or
                    if I need to pop out.

                    Good luck with your battle, don't give up.

                    Hope your boys are well

                    Clair xxx

                    --- In Myotubular_Myopathy@yahoogroups.com, rachel wriglry
                    <rachel_wrigley@...> wrote:
                    >
                    > hi clair
                    > thanks for your advice we do have a nurse that comes out every
                    mth to check on my youngest son as hes fed by ng tube and there come
                    out to weight him to make sure hes putting weight on when we brought
                    up about the oxygen the hospital said if he needed oxygen then he
                    should be in hospital and with the oxymeter there said no that there
                    dont give them out and that even kids with trachs dont get them we
                    havent even got a apnea moniter we had a keyworker but she wasnt much
                    help she dosent come out anymore she was supose to help us get the
                    things we needed for our boys i have 3 children 2 have suspected mtm
                    it took us nearly a year to get a suction machine im not sure what
                    route to go now ive even contacted our local mp to see if he could
                    help me get the things i need but it will be a long draw out affair
                    etc but i feel its a must i have theses things for my sons it took us
                    4mths to get a chair for marconi we had to wait for the permission of
                    the hospital to see if we could
                    > have it we have even asked the docs to sign a form we made saying
                    that we have asked for the things etc and if anything was to happen
                    to my boys then there carnt say we didnt ask for them the docs
                    wouldnt sign it!!! what a joke !!are u going to the confrence in
                    london?
                    > ive thought of asking for a cough assisit but i know ill be
                    turned down flat
                    > anyway ive gone on eough now lol
                    > hope everyones good take care
                    > Rachel&boys
                    >
                    > Clair Bell <clair.bell@...> wrote:
                    > Hi Rachel
                    >
                    > I'm in the uk too, I live in Durham.
                    >
                    > Really sorry to hear that your having trouble getting a pulse
                    > oxymeter. Have you a specialist health visitor that comes to see
                    > your boys? As ours comes to see Daniel every couple of weeks, they
                    > are part of the Outreach Team and they have provided our oxymeter
                    we
                    > even had it before Daniel left Neonatal, they also provided me with
                    2
                    > suction machines one for upstairs and one down stairs and they
                    > deliver all my suction tubes etc. I also asked to have some oxygen
                    > at home for emergencies only as Daniel is always in air and his
                    > consultant authorised this then Daniel's GP organised all this for
                    us
                    > too. So i now have a 10 ltr upstairs and also a 2 ltr travel size.
                    > You need to start pushing for all you need. Do you use an Apnea
                    > Alarm then? Oxymeters are expensive to buy as I bought a portable
                    > oxymeter which was £750. Bless you, I can't believe your having to
                    > fight for one when they are such an important bit of equipment for
                    > our boys. I only use Daniel's when he's asleep or if I think he's
                    > not too well.
                    > Anyway, good luck and fight your corner.
                    >
                    > Clair xxx
                    >
                    > --- In Myotubular_Myopathy@yahoogroups.com, rachel wriglry
                    > <rachel_wrigley@> wrote:
                    > >
                    > > hi
                    > > im in the uk
                    > > we have asked for a pulse oxymeter when my other marconi was very
                    > ill we nearly lost him a few times and wanted one at home the
                    > hospital refused us one i even thought of writing to my local
                    > goverment for help but it would be a long draw out affair we also
                    > asked for a little bottle oxygen for the jorney the to hospital we
                    > too was refused that we only got a suction machine after us kicking
                    > up a fuss we feel so let down by the hospital
                    > >
                    > > "Spampinato, Rosemary" <spampinator@> wrote:
                    > > My experience is that a NICU's acceptable low is 92 and
                    > some outpatient specialist agree low = 88. However, I agree with
                    > Dana. Each kiddo has their own baseline. I wouldn't be comfortable
                    > with not getting over 92 though. I think it is imperative that you
                    > have a pulse oximeter to monitor yourself. Please tell me why you
                    are
                    > unable to get one? I may have missed this explaination to the
                    group.
                    > And, where do you live? I understand insurance and may be able to
                    > help.
                    > >
                    > >
                    > > ---------------------------------
                    > > From: Myotubular_Myopathy@yahoogroups.com
                    > [mailto:Myotubular_Myopathy@yahoogroups.com] On Behalf Of Dana
                    > > Sent: Friday, August 24, 2007 1:09 AM
                    > > To: Myotubular_Myopathy@yahoogroups.com
                    > > Subject: [Myotubular_Myopathy] Re: over night sleep study !!!!!!
                    > >
                    > >
                    > >
                    > > Hi Rachel!! From what I understand (and I could be wrong) every
                    > child
                    > > has their own "normal". Everytime Cason sees a new Dr they ask me
                    > what
                    > > Cason's normal O2 range is. Cason's normal is between 97-100%. Of
                    > > course when he is sick it is alot lower. Cason's Pulmonologist
                    > wants to
                    > > be notified when his O2 rates hang out lower than 96%. I know
                    some
                    > > kids' normal O2's are between 94-96%. I would just wait and see
                    > what
                    > > the Dr says. Good luck!! Dana and Cason
                    > >
                    > > --- In Myotubular_Myopathy@yahoogroups.com, "rachel_wrigley"
                    > > <rachel_wrigley@> wrote:
                    > > >
                    > > > just wanted to ask whats the normal rage for sats at night
                    regan
                    > just
                    > > > had done i put the machine on 2 nights running and it never got
                    > over
                    > > 92
                    > > > and the lowest was 89 is this normal i have the machine till
                    > tuesday
                    > > do
                    > > > i try again another night or should i leave and tell the nurses
                    > when
                    > > > there pick up the machine i hope there send the results to doc
                    A
                    > S A
                    > > P
                    > > > thanks every one for reading it
                    > > > take care all
                    > > > Rachel
                    > > >
                    > > > i just wish i had a pulse oxymeter of my own hospital would let
                    > me
                    > > have
                    > > > one ive had to buy one from ebay which is a small finger one !!
                    > > >
                    > >
                    > >
                    > >
                    > >
                    > >
                    > >
                    > >
                    > >
                    > > ---------------------------------
                    > > Yahoo! Answers - Get better answers from someone who knows. Tryit
                    > now.
                    > >
                    >
                    >
                    >
                    >
                    >
                    >
                    > ---------------------------------
                    > For ideas on reducing your carbon footprint visit Yahoo! For Good
                    this month.
                    >
                  • rachel wriglry
                    hi clair im in leeds im sorry to here u have been in hospital with your son i know how that feels we used to have portage for marconi thats simular to a
                    Message 9 of 20 , Aug 26, 2007
                    • 0 Attachment
                      hi clair
                      im  in leeds im sorry to here u have been in hospital with your son i know how that feels we used to have portage for marconi thats simular to a nursey nurse who do i ask about the speacilist health visitor like i said im not sure where to start mraconi has a chair called squiggles its made by a company called leckey the chair fits him lovely he used to have a giraffe chair and he didnt like it it scares me evrytime one of the boys are ill with me not having what we need there no opoin but to take them to the hospital oh that was it the doc also said about the oxygen that it compromise marconis breathing if he was to have too much oxygen i know we bring tranfsered to london to see someone down there i think it might professer muntoni so if i no luk at my hospital im going to ask there but i think there will say the boys are doing well so there fore there dont need these things etc  

                      Clair Bell <clair.bell@...> wrote:
                      Hi Rachel

                      This must be awful for you fighting for all this equipment, as if you
                      haven't got enough on then this on top. I can't believe we are in
                      the same country your fighting and we seem to be getting everything
                      provided. Where abouts in the UK are you? Daniel's physio got him a
                      Sunbeam Chair and has just recently been fitted for a B Chair. As
                      for the Oxygen, the hospital said the same to me at first that if he
                      required oxygen then he should be in hospital, so I explained all I
                      wanted it for was emergencies while waiting for the ambulance as his
                      sats had dropped quite a bit. So the last twice i've had to call an
                      ambulance we've had the oxygen and it's been alot better and I feel
                      alot better having it now. We have just recently come out of
                      hospital again, we have been in and out over the past few weeks with
                      chest infection but all recovered now, fingers crossed. It was
                      mainly aspiration which had caused this but he also had tonsillitis
                      as well...bless him.

                      I would check in your area about a Specialist Health Visitor as they
                      can be very useful. Also do you have a Specialist Nursery Nurse?
                      Ours comes in twice a week for 2 hrs and she's great, she entertains
                      him and plays with him while I can get on with stuff in the house, or
                      if I need to pop out.

                      Good luck with your battle, don't give up.

                      Hope your boys are well

                      Clair xxx

                      --- In Myotubular_Myopathy @yahoogroups. com, rachel wriglry
                      <rachel_wrigley@ ...> wrote:
                      >
                      > hi clair
                      > thanks for your advice we do have a nurse that comes out every
                      mth to check on my youngest son as hes fed by ng tube and there come
                      out to weight him to make sure hes putting weight on when we brought
                      up about the oxygen the hospital said if he needed oxygen then he
                      should be in hospital and with the oxymeter there said no that there
                      dont give them out and that even kids with trachs dont get them we
                      havent even got a apnea moniter we had a keyworker but she wasnt much
                      help she dosent come out anymore she was supose to help us get the
                      things we needed for our boys i have 3 children 2 have suspected mtm
                      it took us nearly a year to get a suction machine im not sure what
                      route to go now ive even contacted our local mp to see if he could
                      help me get the things i need but it will be a long draw out affair
                      etc but i feel its a must i have theses things for my sons it took us
                      4mths to get a chair for marconi we had to wait for the permission of
                      the hospital to see if we could
                      > have it we have even asked the docs to sign a form we made saying
                      that we have asked for the things etc and if anything was to happen
                      to my boys then there carnt say we didnt ask for them the docs
                      wouldnt sign it!!! what a joke !!are u going to the confrence in
                      london?
                      > ive thought of asking for a cough assisit but i know ill be
                      turned down flat
                      > anyway ive gone on eough now lol
                      > hope everyones good take care
                      > Rachel&boys
                      >
                      > Clair Bell <clair.bell@ ...> wrote:
                      > Hi Rachel
                      >
                      > I'm in the uk too, I live in Durham.
                      >
                      > Really sorry to hear that your having trouble getting a pulse
                      > oxymeter. Have you a specialist health visitor that comes to see
                      > your boys? As ours comes to see Daniel every couple of weeks, they
                      > are part of the Outreach Team and they have provided our oxymeter
                      we
                      > even had it before Daniel left Neonatal, they also provided me with
                      2
                      > suction machines one for upstairs and one down stairs and they
                      > deliver all my suction tubes etc. I also asked to have some oxygen
                      > at home for emergencies only as Daniel is always in air and his
                      > consultant authorised this then Daniel's GP organised all this for
                      us
                      > too. So i now have a 10 ltr upstairs and also a 2 ltr travel size.
                      > You need to start pushing for all you need. Do you use an Apnea
                      > Alarm then? Oxymeters are expensive to buy as I bought a portable
                      > oxymeter which was £750. Bless you, I can't believe your having to
                      > fight for one when they are such an important bit of equipment for
                      > our boys. I only use Daniel's when he's asleep or if I think he's
                      > not too well.
                      > Anyway, good luck and fight your corner.
                      >
                      > Clair xxx
                      >
                      > --- In Myotubular_Myopathy @yahoogroups. com, rachel wriglry
                      > <rachel_wrigley@ > wrote:
                      > >
                      > > hi
                      > > im in the uk
                      > > we have asked for a pulse oxymeter when my other marconi was very
                      > ill we nearly lost him a few times and wanted one at home the
                      > hospital refused us one i even thought of writing to my local
                      > goverment for help but it would be a long draw out affair we also
                      > asked for a little bottle oxygen for the jorney the to hospital we
                      > too was refused that we only got a suction machine after us kicking
                      > up a fuss we feel so let down by the hospital
                      > >
                      > > "Spampinato, Rosemary" <spampinator@ > wrote:
                      > > My experience is that a NICU's acceptable low is 92 and
                      > some outpatient specialist agree low = 88. However, I agree with
                      > Dana. Each kiddo has their own baseline. I wouldn't be comfortable
                      > with not getting over 92 though. I think it is imperative that you
                      > have a pulse oximeter to monitor yourself. Please tell me why you
                      are
                      > unable to get one? I may have missed this explaination to the
                      group.
                      > And, where do you live? I understand insurance and may be able to
                      > help.
                      > >
                      > >
                      > > ------------ --------- --------- ---
                      > > From: Myotubular_Myopathy @yahoogroups. com
                      > [mailto:Myotubular_Myopathy @yahoogroups. com] On Behalf Of Dana
                      > > Sent: Friday, August 24, 2007 1:09 AM
                      > > To: Myotubular_Myopathy @yahoogroups. com
                      > > Subject: [Myotubular_ Myopathy] Re: over night sleep study !!!!!!
                      > >
                      > >
                      > >
                      > > Hi Rachel!! From what I understand (and I could be wrong) every
                      > child
                      > > has their own "normal". Everytime Cason sees a new Dr they ask me
                      > what
                      > > Cason's normal O2 range is. Cason's normal is between 97-100%. Of
                      > > course when he is sick it is alot lower. Cason's Pulmonologist
                      > wants to
                      > > be notified when his O2 rates hang out lower than 96%. I know
                      some
                      > > kids' normal O2's are between 94-96%. I would just wait and see
                      > what
                      > > the Dr says. Good luck!! Dana and Cason
                      > >
                      > > --- In Myotubular_Myopathy @yahoogroups. com, "rachel_wrigley"
                      > > <rachel_wrigley@ > wrote:
                      > > >
                      > > > just wanted to ask whats the normal rage for sats at night
                      regan
                      > just
                      > > > had done i put the machine on 2 nights running and it never got
                      > over
                      > > 92
                      > > > and the lowest was 89 is this normal i have the machine till
                      > tuesday
                      > > do
                      > > > i try again another night or should i leave and tell the nurses
                      > when
                      > > > there pick up the machine i hope there send the results to doc
                      A
                      > S A
                      > > P
                      > > > thanks every one for reading it
                      > > > take care all
                      > > > Rachel
                      > > >
                      > > > i just wish i had a pulse oxymeter of my own hospital would let
                      > me
                      > > have
                      > > > one ive had to buy one from ebay which is a small finger one !!
                      > > >
                      > >
                      > >
                      > >
                      > >
                      > >
                      > >
                      > >
                      > >
                      > > ------------ --------- --------- ---
                      > > Yahoo! Answers - Get better answers from someone who knows. Tryit
                      > now.
                      > >
                      >
                      >
                      >
                      >
                      >
                      >
                      > ------------ --------- --------- ---
                      > For ideas on reducing your carbon footprint visit Yahoo! For Good
                      this month.
                      >



                      Yahoo! Answers - Get better answers from someone who knows. Try it now.

                    • Toni Abram
                      Hello Rachel I have been reading your emails about getting your problems getting equipment from the hospital and have a couple of ideas for you. BDF Newlife is
                      Message 10 of 20 , Aug 27, 2007
                      • 0 Attachment
                        Hello Rachel
                         
                        I have been reading your emails about getting your problems getting equipment from the hospital and have a couple of ideas for you.
                         
                        BDF Newlife is a charity that operate a Child and Family Grants scheme - the scheme exists to help those who need help, perhaps to buy special equipment.  You can find out more at http://www.bdfnewlife.co.uk/docs/family_patients_area/fp_child_fam_grant_1.htm.
                         
                        There is also the Joseph Patrick Trust http://www.muscular-dystrophy.org/fundraising/joseph_patrick_trust/index.html  The Joseph Patrick Trust is the welfare fund of the Muscular Dystrophy Campaign giving grants towards equipment and one off discretionary payments.
                         
                        Contact a Family (http://www.cafamily.org.uk/helpline.html) might be good for you to talk to also - they have a helpline which you can either telphone or email and on their website advertise being able to help with the following things:
                        • Not sure what benefits or tax credits to claim?
                        • Need advice about assessments and statements of special educational needs for your child?
                        • Looking to make contact with other parents caring for a child with a rare disorder?
                        • Want to know where your local parents support group is?
                        • Trying to find information about your child's condition?
                        • Want to know what your rights are when seeking help from social services?
                        • Looking for details of charities which give grants to families with disabled children?
                        • Seen anything on this website you need more advice on?
                        • Want to join a local Contact a Family project or office?
                        • Need advice about financial help to adapt your home?
                        • Want to order one of our many free factsheets for families?
                        • Just want someone to talk to?
                         
                        Toni xx

                         
                        ----- Original Message -----
                        Sent: Sunday, August 26, 2007 10:03 AM
                        Subject: Re: [Myotubular_Myopathy] Re: over night sleep study !!!!!!

                        hi clair
                        im  in leeds im sorry to here u have been in hospital with your son i know how that feels we used to have portage for marconi thats simular to a nursey nurse who do i ask about the speacilist health visitor like i said im not sure where to start mraconi has a chair called squiggles its made by a company called leckey the chair fits him lovely he used to have a giraffe chair and he didnt like it it scares me evrytime one of the boys are ill with me not having what we need there no opoin but to take them to the hospital oh that was it the doc also said about the oxygen that it compromise marconis breathing if he was to have too much oxygen i know we bring tranfsered to london to see someone down there i think it might professer muntoni so if i no luk at my hospital im going to ask there but i think there will say the boys are doing well so there fore there dont need these things etc  

                        Clair Bell <clair.bell@tesco. net> wrote:
                        Hi Rachel

                        This must be awful for you fighting for all this equipment, as if you
                        haven't got enough on then this on top. I can't believe we are in
                        the same country your fighting and we seem to be getting everything
                        provided. Where abouts in the UK are you? Daniel's physio got him a
                        Sunbeam Chair and has just recently been fitted for a B Chair. As
                        for the Oxygen, the hospital said the same to me at first that if he
                        required oxygen then he should be in hospital, so I explained all I
                        wanted it for was emergencies while waiting for the ambulance as his
                        sats had dropped quite a bit. So the last twice i've had to call an
                        ambulance we've had the oxygen and it's been alot better and I feel
                        alot better having it now. We have just recently come out of
                        hospital again, we have been in and out over the past few weeks with
                        chest infection but all recovered now, fingers crossed. It was
                        mainly aspiration which had caused this but he also had tonsillitis
                        as well...bless him.

                        I would check in your area about a Specialist Health Visitor as they
                        can be very useful. Also do you have a Specialist Nursery Nurse?
                        Ours comes in twice a week for 2 hrs and she's great, she entertains
                        him and plays with him while I can get on with stuff in the house, or
                        if I need to pop out.

                        Good luck with your battle, don't give up.

                        Hope your boys are well

                        Clair xxx

                        --- In Myotubular_Myopathy @yahoogroups. com, rachel wriglry
                        <rachel_wrigley@ ...> wrote:
                        >
                        > hi clair
                        > thanks for your advice we do have a nurse that comes out every
                        mth to check on my youngest son as hes fed by ng tube and there come
                        out to weight him to make sure hes putting weight on when we brought
                        up about the oxygen the hospital said if he needed oxygen then he
                        should be in hospital and with the oxymeter there said no that there
                        dont give them out and that even kids with trachs dont get them we
                        havent even got a apnea moniter we had a keyworker but she wasnt much
                        help she dosent come out anymore she was supose to help us get the
                        things we needed for our boys i have 3 children 2 have suspected mtm
                        it took us nearly a year to get a suction machine im not sure what
                        route to go now ive even contacted our local mp to see if he could
                        help me get the things i need but it will be a long draw out affair
                        etc but i feel its a must i have theses things for my sons it took us
                        4mths to get a chair for marconi we had to wait for the permission of
                        the hospital to see if we could
                        > have it we have even asked the docs to sign a form we made saying
                        that we have asked for the things etc and if anything was to happen
                        to my boys then there carnt say we didnt ask for them the docs
                        wouldnt sign it!!! what a joke !!are u going to the confrence in
                        london?
                        > ive thought of asking for a cough assisit but i know ill be
                        turned down flat
                        > anyway ive gone on eough now lol
                        > hope everyones good take care
                        > Rachel&boys
                        >
                        > Clair Bell <clair.bell@ ...> wrote:
                        > Hi Rachel
                        >
                        > I'm in the uk too, I live in Durham.
                        >
                        > Really sorry to hear that your having trouble getting a pulse
                        > oxymeter. Have you a specialist health visitor that comes to see
                        > your boys? As ours comes to see Daniel every couple of weeks, they
                        > are part of the Outreach Team and they have provided our oxymeter
                        we
                        > even had it before Daniel left Neonatal, they also provided me with
                        2
                        > suction machines one for upstairs and one down stairs and they
                        > deliver all my suction tubes etc. I also asked to have some oxygen
                        > at home for emergencies only as Daniel is always in air and his
                        > consultant authorised this then Daniel's GP organised all this for
                        us
                        > too. So i now have a 10 ltr upstairs and also a 2 ltr travel size.
                        > You need to start pushing for all you need. Do you use an Apnea
                        > Alarm then? Oxymeters are expensive to buy as I bought a portable
                        > oxymeter which was £750. Bless you, I can't believe your having to
                        > fight for one when they are such an important bit of equipment for
                        > our boys. I only use Daniel's when he's asleep or if I think he's
                        > not too well.
                        > Anyway, good luck and fight your corner.
                        >
                        > Clair xxx
                        >
                        > --- In Myotubular_Myopathy @yahoogroups. com, rachel wriglry
                        > <rachel_wrigley@ > wrote:
                        > >
                        > > hi
                        > > im in the uk
                        > > we have asked for a pulse oxymeter when my other marconi was very
                        > ill we nearly lost him a few times and wanted one at home the
                        > hospital refused us one i even thought of writing to my local
                        > goverment for help but it would be a long draw out affair we also
                        > asked for a little bottle oxygen for the jorney the to hospital we
                        > too was refused that we only got a suction machine after us kicking
                        > up a fuss we feel so let down by the hospital
                        > >
                        > > "Spampinato, Rosemary" <spampinator@ > wrote:
                        > > My experience is that a NICU's acceptable low is 92 and
                        > some outpatient specialist agree low = 88. However, I agree with
                        > Dana. Each kiddo has their own baseline. I wouldn't be comfortable
                        > with not getting over 92 though. I think it is imperative that you
                        > have a pulse oximeter to monitor yourself. Please tell me why you
                        are
                        > unable to get one? I may have missed this explaination to the
                        group.
                        > And, where do you live? I understand insurance and may be able to
                        > help.
                        > >
                        > >
                        > > ------------ --------- --------- ---
                        > > From: Myotubular_Myopathy @yahoogroups. com
                        > [mailto:Myotubular_Myopathy @yahoogroups. com] On Behalf Of Dana
                        > > Sent: Friday, August 24, 2007 1:09 AM
                        > > To: Myotubular_Myopathy @yahoogroups. com
                        > > Subject: [Myotubular_ Myopathy] Re: over night sleep study !!!!!!
                        > >
                        > >
                        > >
                        > > Hi Rachel!! From what I understand (and I could be wrong) every
                        > child
                        > > has their own "normal". Everytime Cason sees a new Dr they ask me
                        > what
                        > > Cason's normal O2 range is. Cason's normal is between 97-100%. Of
                        > > course when he is sick it is alot lower. Cason's Pulmonologist
                        > wants to
                        > > be notified when his O2 rates hang out lower than 96%. I know
                        some
                        > > kids' normal O2's are between 94-96%. I would just wait and see
                        > what
                        > > the Dr says. Good luck!! Dana and Cason
                        > >
                        > > --- In Myotubular_Myopathy @yahoogroups. com, "rachel_wrigley"
                        > > <rachel_wrigley@ > wrote:
                        > > >
                        > > > just wanted to ask whats the normal rage for sats at night
                        regan
                        > just
                        > > > had done i put the machine on 2 nights running and it never got
                        > over
                        > > 92
                        > > > and the lowest was 89 is this normal i have the machine till
                        > tuesday
                        > > do
                        > > > i try again another night or should i leave and tell the nurses
                        > when
                        > > > there pick up the machine i hope there send the results to doc
                        A
                        > S A
                        > > P
                        > > > thanks every one for reading it
                        > > > take care all
                        > > > Rachel
                        > > >
                        > > > i just wish i had a pulse oxymeter of my own hospital would let
                        > me
                        > > have
                        > > > one ive had to buy one from ebay which is a small finger one !!
                        > > >
                        > >
                        > >
                        > >
                        > >
                        > >
                        > >
                        > >
                        > >
                        > > ------------ --------- --------- ---
                        > > Yahoo! Answers - Get better answers from someone who knows. Tryit
                        > now.
                        > >
                        >
                        >
                        >
                        >
                        >
                        >
                        > ------------ --------- --------- ---
                        > For ideas on reducing your carbon footprint visit Yahoo! For Good
                        this month.
                        >



                        Yahoo! Answers - Get better answers from someone who knows. Try it now.

                      • Toni Abram
                        Hello Rachel I have been reading your emails about getting your problems getting equipment from the hospital and have a couple of ideas for you. BDF Newlife is
                        Message 11 of 20 , Aug 27, 2007
                        • 0 Attachment
                           
                          Hello Rachel
                           
                          I have been reading your emails about getting your problems getting equipment from the hospital and have a couple of ideas for you.
                           
                          BDF Newlife is a charity that operate a Child and Family Grants scheme - the scheme exists to help those who need help, perhaps to buy special equipment.  You can find out more at http://www.bdfnewlife.co.uk/docs/family_patients_area/fp_child_fam_grant_1.htm.
                           
                          There is also the Joseph Patrick Trust http://www.muscular-dystrophy.org/fundraising/joseph_patrick_trust/index.html  The Joseph Patrick Trust is the welfare fund of the Muscular Dystrophy Campaign giving grants towards equipment and one off discretionary payments.
                           
                          Contact a Family (http://www.cafamily.org.uk/helpline.html) might be good for you to talk to also - they have a helpline which you can either telphone or email and on their website advertise being able to help with the following things:
                          • Not sure what benefits or tax credits to claim?
                          • Need advice about assessments and statements of special educational needs for your child?
                          • Looking to make contact with other parents caring for a child with a rare disorder?
                          • Want to know where your local parents support group is?
                          • Trying to find information about your child's condition?
                          • Want to know what your rights are when seeking help from social services?
                          • Looking for details of charities which give grants to families with disabled children?
                          • Seen anything on this website you need more advice on?
                          • Want to join a local Contact a Family project or office?
                          • Need advice about financial help to adapt your home?
                          • Want to order one of our many free factsheets for families?
                          • Just want someone to talk to?
                           
                          Toni xx

                           
                          ----- Original Message -----
                          Sent: Sunday, August 26, 2007 10:03 AM
                          Subject: Re: [Myotubular_Myopathy] Re: over night sleep study !!!!!!

                          hi clair
                          im  in leeds im sorry to here u have been in hospital with your son i know how that feels we used to have portage for marconi thats simular to a nursey nurse who do i ask about the speacilist health visitor like i said im not sure where to start mraconi has a chair called squiggles its made by a company called leckey the chair fits him lovely he used to have a giraffe chair and he didnt like it it scares me evrytime one of the boys are ill with me not having what we need there no opoin but to take them to the hospital oh that was it the doc also said about the oxygen that it compromise marconis breathing if he was to have too much oxygen i know we bring tranfsered to london to see someone down there i think it might professer muntoni so if i no luk at my hospital im going to ask there but i think there will say the boys are doing well so there fore there dont need these things etc  

                          Clair Bell <clair.bell@tesco. net> wrote:
                          Hi Rachel

                          This must be awful for you fighting for all this equipment, as if you
                          haven't got enough on then this on top. I can't believe we are in
                          the same country your fighting and we seem to be getting everything
                          provided. Where abouts in the UK are you? Daniel's physio got him a
                          Sunbeam Chair and has just recently been fitted for a B Chair. As
                          for the Oxygen, the hospital said the same to me at first that if he
                          required oxygen then he should be in hospital, so I explained all I
                          wanted it for was emergencies while waiting for the ambulance as his
                          sats had dropped quite a bit. So the last twice i've had to call an
                          ambulance we've had the oxygen and it's been alot better and I feel
                          alot better having it now. We have just recently come out of
                          hospital again, we have been in and out over the past few weeks with
                          chest infection but all recovered now, fingers crossed. It was
                          mainly aspiration which had caused this but he also had tonsillitis
                          as well...bless him.

                          I would check in your area about a Specialist Health Visitor as they
                          can be very useful. Also do you have a Specialist Nursery Nurse?
                          Ours comes in twice a week for 2 hrs and she's great, she entertains
                          him and plays with him while I can get on with stuff in the house, or
                          if I need to pop out.

                          Good luck with your battle, don't give up.

                          Hope your boys are well

                          Clair xxx

                          --- In Myotubular_Myopathy @yahoogroups. com, rachel wriglry
                          <rachel_wrigley@ ...> wrote:
                          >
                          > hi clair
                          > thanks for your advice we do have a nurse that comes out every
                          mth to check on my youngest son as hes fed by ng tube and there come
                          out to weight him to make sure hes putting weight on when we brought
                          up about the oxygen the hospital said if he needed oxygen then he
                          should be in hospital and with the oxymeter there said no that there
                          dont give them out and that even kids with trachs dont get them we
                          havent even got a apnea moniter we had a keyworker but she wasnt much
                          help she dosent come out anymore she was supose to help us get the
                          things we needed for our boys i have 3 children 2 have suspected mtm
                          it took us nearly a year to get a suction machine im not sure what
                          route to go now ive even contacted our local mp to see if he could
                          help me get the things i need but it will be a long draw out affair
                          etc but i feel its a must i have theses things for my sons it took us
                          4mths to get a chair for marconi we had to wait for the permission of
                          the hospital to see if we could
                          > have it we have even asked the docs to sign a form we made saying
                          that we have asked for the things etc and if anything was to happen
                          to my boys then there carnt say we didnt ask for them the docs
                          wouldnt sign it!!! what a joke !!are u going to the confrence in
                          london?
                          > ive thought of asking for a cough assisit but i know ill be
                          turned down flat
                          > anyway ive gone on eough now lol
                          > hope everyones good take care
                          > Rachel&boys
                          >
                          > Clair Bell <clair.bell@ ...> wrote:
                          > Hi Rachel
                          >
                          > I'm in the uk too, I live in Durham.
                          >
                          > Really sorry to hear that your having trouble getting a pulse
                          > oxymeter. Have you a specialist health visitor that comes to see
                          > your boys? As ours comes to see Daniel every couple of weeks, they
                          > are part of the Outreach Team and they have provided our oxymeter
                          we
                          > even had it before Daniel left Neonatal, they also provided me with
                          2
                          > suction machines one for upstairs and one down stairs and they
                          > deliver all my suction tubes etc. I also asked to have some oxygen
                          > at home for emergencies only as Daniel is always in air and his
                          > consultant authorised this then Daniel's GP organised all this for
                          us
                          > too. So i now have a 10 ltr upstairs and also a 2 ltr travel size.
                          > You need to start pushing for all you need. Do you use an Apnea
                          > Alarm then? Oxymeters are expensive to buy as I bought a portable
                          > oxymeter which was £750. Bless you, I can't believe your having to
                          > fight for one when they are such an important bit of equipment for
                          > our boys. I only use Daniel's when he's asleep or if I think he's
                          > not too well.
                          > Anyway, good luck and fight your corner.
                          >
                          > Clair xxx
                          >
                          > --- In Myotubular_Myopathy @yahoogroups. com, rachel wriglry
                          > <rachel_wrigley@ > wrote:
                          > >
                          > > hi
                          > > im in the uk
                          > > we have asked for a pulse oxymeter when my other marconi was very
                          > ill we nearly lost him a few times and wanted one at home the
                          > hospital refused us one i even thought of writing to my local
                          > goverment for help but it would be a long draw out affair we also
                          > asked for a little bottle oxygen for the jorney the to hospital we
                          > too was refused that we only got a suction machine after us kicking
                          > up a fuss we feel so let down by the hospital
                          > >
                          > > "Spampinato, Rosemary" <spampinator@ > wrote:
                          > > My experience is that a NICU's acceptable low is 92 and
                          > some outpatient specialist agree low = 88. However, I agree with
                          > Dana. Each kiddo has their own baseline. I wouldn't be comfortable
                          > with not getting over 92 though. I think it is imperative that you
                          > have a pulse oximeter to monitor yourself. Please tell me why you
                          are
                          > unable to get one? I may have missed this explaination to the
                          group.
                          > And, where do you live? I understand insurance and may be able to
                          > help.
                          > >
                          > >
                          > > ------------ --------- --------- ---
                          > > From: Myotubular_Myopathy @yahoogroups. com
                          > [mailto:Myotubular_Myopathy @yahoogroups. com] On Behalf Of Dana
                          > > Sent: Friday, August 24, 2007 1:09 AM
                          > > To: Myotubular_Myopathy @yahoogroups. com
                          > > Subject: [Myotubular_ Myopathy] Re: over night sleep study !!!!!!
                          > >
                          > >
                          > >
                          > > Hi Rachel!! From what I understand (and I could be wrong) every
                          > child
                          > > has their own "normal". Everytime Cason sees a new Dr they ask me
                          > what
                          > > Cason's normal O2 range is. Cason's normal is between 97-100%. Of
                          > > course when he is sick it is alot lower. Cason's Pulmonologist
                          > wants to
                          > > be notified when his O2 rates hang out lower than 96%. I know
                          some
                          > > kids' normal O2's are between 94-96%. I would just wait and see
                          > what
                          > > the Dr says. Good luck!! Dana and Cason
                          > >
                          > > --- In Myotubular_Myopathy @yahoogroups. com, "rachel_wrigley"
                          > > <rachel_wrigley@ > wrote:
                          > > >
                          > > > just wanted to ask whats the normal rage for sats at night
                          regan
                          > just
                          > > > had done i put the machine on 2 nights running and it never got
                          > over
                          > > 92
                          > > > and the lowest was 89 is this normal i have the machine till
                          > tuesday
                          > > do
                          > > > i try again another night or should i leave and tell the nurses
                          > when
                          > > > there pick up the machine i hope there send the results to doc
                          A
                          > S A
                          > > P
                          > > > thanks every one for reading it
                          > > > take care all
                          > > > Rachel
                          > > >
                          > > > i just wish i had a pulse oxymeter of my own hospital would let
                          > me
                          > > have
                          > > > one ive had to buy one from ebay which is a small finger one !!
                          > > >
                          > >
                          > >
                          > >
                          > >
                          > >
                          > >
                          > >
                          > >
                          > > ------------ --------- --------- ---
                          > > Yahoo! Answers - Get better answers from someone who knows. Tryit
                          > now.
                          > >
                          >
                          >
                          >
                          >
                          >
                          >
                          > ------------ --------- --------- ---
                          > For ideas on reducing your carbon footprint visit Yahoo! For Good
                          this month.
                          >



                          Yahoo! Answers - Get better answers from someone who knows. Try it now.

                        • Spampinato, Rosemary
                          It s time to contact the government. Your right! Maybe there is an advocacy group in the UK that has political connections. I ll say a prayer. I wish I could
                          Message 12 of 20 , Aug 27, 2007
                          • 0 Attachment
                            It's time to contact the government. Your right! Maybe there is an advocacy group in the UK that has political connections.  I'll say a prayer. I wish I could send you one from the US.


                            From: Myotubular_Myopathy@yahoogroups.com [mailto:Myotubular_Myopathy@yahoogroups.com] On Behalf Of rachel wriglry
                            Sent: Saturday, August 25, 2007 7:28 AM
                            To: Myotubular_Myopathy@yahoogroups.com
                            Subject: Re: [Myotubular_Myopathy] Re: over night sleep study !!!!!!

                            hi clair
                            thanks for your advice we do have a nurse that comes out every mth to check on my youngest son as hes fed by ng tube and there come out to weight him to make sure hes putting weight on when we brought up about the oxygen the hospital said if he needed oxygen then he should be in hospital and with the oxymeter there said no that there dont give them out and that even kids with trachs dont get them we havent even got a apnea moniter we had a keyworker but she wasnt much help she dosent come out anymore she was supose to help us get the things we needed for our boys i have 3 children 2 have suspected mtm it took us nearly a year to get a suction machine im not sure what route to go now ive even contacted our local mp to see if he could help me get the things i need but it will be a long draw out affair etc but i feel its a must i have theses things for my sons it took us 4mths to get a chair for marconi we had to wait for the permission of the hospital to see if we could have it we have even asked the docs to sign a form we made saying that we have asked for the things etc and if anything was to happen to my boys then there carnt say we didnt ask for them the docs wouldnt sign it!!! what a joke !!are u going to the confrence in london?
                            ive thought of asking for a cough assisit but i know ill be turned down flat
                            anyway ive gone on eough now lol
                            hope everyones good take care
                            Rachel&boys

                            Clair Bell <clair.bell@tesco. net> wrote:
                            Hi Rachel

                            I'm in the uk too, I live in Durham.

                            Really sorry to hear that your having trouble getting a pulse
                            oxymeter. Have you a specialist health visitor that comes to see
                            your boys? As ours comes to see Daniel every couple of weeks, they
                            are part of the Outreach Team and they have provided our oxymeter we
                            even had it before Daniel left Neonatal, they also provided me with 2
                            suction machines one for upstairs and one down stairs and they
                            deliver all my suction tubes etc. I also asked to have some oxygen
                            at home for emergencies only as Daniel is always in air and his
                            consultant authorised this then Daniel's GP organised all this for us
                            too. So i now have a 10 ltr upstairs and also a 2 ltr travel size.
                            You need to start pushing for all you need. Do you use an Apnea
                            Alarm then? Oxymeters are expensive to buy as I bought a portable
                            oxymeter which was £750. Bless you, I can't believe your having to
                            fight for one when they are such an important bit of equipment for
                            our boys. I only use Daniel's when he's asleep or if I think he's
                            not too well.
                            Anyway, good luck and fight your corner.

                            Clair xxx

                            --- In Myotubular_Myopathy @yahoogroups. com, rachel wriglry
                            <rachel_wrigley@ ...> wrote:
                            >
                            > hi
                            > im in the uk
                            > we have asked for a pulse oxymeter when my other marconi was very
                            ill we nearly lost him a few times and wanted one at home the
                            hospital refused us one i even thought of writing to my local
                            goverment for help but it would be a long draw out affair we also
                            asked for a little bottle oxygen for the jorney the to hospital we
                            too was refused that we only got a suction machine after us kicking
                            up a fuss we feel so let down by the hospital
                            >
                            > "Spampinato, Rosemary" <spampinator@ ...> wrote:
                            > My experience is that a NICU's acceptable low is 92 and
                            some outpatient specialist agree low = 88. However, I agree with
                            Dana. Each kiddo has their own baseline. I wouldn't be comfortable
                            with not getting over 92 though. I think it is imperative that you
                            have a pulse oximeter to monitor yourself. Please tell me why you are
                            unable to get one? I may have missed this explaination to the group.
                            And, where do you live? I understand insurance and may be able to
                            help.
                            >
                            >
                            > ------------ --------- --------- ---
                            > From: Myotubular_Myopathy @yahoogroups. com
                            [mailto:Myotubular_Myopathy @yahoogroups. com] On Behalf Of Dana
                            > Sent: Friday, August 24, 2007 1:09 AM
                            > To: Myotubular_Myopathy @yahoogroups. com
                            > Subject: [Myotubular_ Myopathy] Re: over night sleep study !!!!!!
                            >
                            >
                            >
                            > Hi Rachel!! From what I understand (and I could be wrong) every
                            child
                            > has their own "normal". Everytime Cason sees a new Dr they ask me
                            what
                            > Cason's normal O2 range is. Cason's normal is between 97-100%. Of
                            > course when he is sick it is alot lower. Cason's Pulmonologist
                            wants to
                            > be notified when his O2 rates hang out lower than 96%. I know some
                            > kids' normal O2's are between 94-96%. I would just wait and see
                            what
                            > the Dr says. Good luck!! Dana and Cason
                            >
                            > --- In Myotubular_Myopathy @yahoogroups. com, "rachel_wrigley"
                            > <rachel_wrigley@ > wrote:
                            > >
                            > > just wanted to ask whats the normal rage for sats at night regan
                            just
                            > > had done i put the machine on 2 nights running and it never got
                            over
                            > 92
                            > > and the lowest was 89 is this normal i have the machine till
                            tuesday
                            > do
                            > > i try again another night or should i leave and tell the nurses
                            when
                            > > there pick up the machine i hope there send the results to doc A
                            S A
                            > P
                            > > thanks every one for reading it
                            > > take care all
                            > > Rachel
                            > >
                            > > i just wish i had a pulse oxymeter of my own hospital would let
                            me
                            > have
                            > > one ive had to buy one from ebay which is a small finger one !!
                            > >
                            >
                            >
                            >
                            >
                            >
                            >
                            >
                            >
                            > ------------ --------- --------- ---
                            > Yahoo! Answers - Get better answers from someone who knows. Tryit
                            now.
                            >



                            For ideas on reducing your carbon footprint visit Yahoo! For Good this month.

                          • KAREN VARDY
                            Rachel, Do you have support from a commumity nursing team? Ours were brilliant and arranged for all of these things. Granted we did have to use a lot of
                            Message 13 of 20 , Aug 27, 2007
                            • 0 Attachment
                              Rachel,
                               
                              Do you have support from a commumity nursing team?
                               
                              Ours were brilliant and arranged for all of these things. Granted we did have to use a lot of pressure to get these things- oxygen converter, a machine which converts normal air into pure oxygen, no need to get up in the middle of the night to change cylinders over, but does run off of your electricity supply. The cost of running it is reimbursed to you from the company who supply it, but you will need conventional oxygen cylinders in case of a power cut. Portable cylinders for emergency travel or bad days when you can still go out.
                               
                              Our pulse ox meter was also a big fight, we did actually refuse to take jack home from hospital at one point, unless they gave us one as I was concerned about Jacks safety, especially as he was on BiPAP overnight!!!!!!
                               
                              If I can help you in any way , let me know
                               
                              Good luck.
                               
                              Karen

                              rachel wriglry <rachel_wrigley@...> wrote:
                              hi
                              im in the uk
                              we have asked for a pulse oxymeter when my other marconi was very ill we nearly lost him a few times and wanted one at home the hospital refused us one i even thought of writing to my local goverment for help but it would be a long draw out affair we also asked for a little bottle oxygen for the jorney the  to hospital we too was refused that we only got a suction machine after us kicking up a fuss we feel so let down by the hospital

                              "Spampinato, Rosemary" <spampinator@ ccbh.com> wrote:
                              My experience is that a NICU's acceptable low is 92 and some outpatient specialist agree low = 88. However, I agree with Dana. Each kiddo has their own baseline. I wouldn't be comfortable with not getting over 92 though.  I think it is imperative that you have a pulse oximeter to monitor yourself. Please tell me why you are unable to get one? I may have missed this explaination to the group. And, where do you live? I understand insurance and may be able to help.


                              From: Myotubular_Myopathy @yahoogroups. com [mailto:Myotubular_ Myopathy@ yahoogroups. com] On Behalf Of Dana
                              Sent: Friday, August 24, 2007 1:09 AM
                              To: Myotubular_Myopathy @yahoogroups. com
                              Subject: [Myotubular_ Myopathy] Re: over night sleep study !!!!!!

                              Hi Rachel!! From what I understand (and I could be wrong) every child
                              has their own "normal". Everytime Cason sees a new Dr they ask me what
                              Cason's normal O2 range is. Cason's normal is between 97-100%. Of
                              course when he is sick it is alot lower. Cason's Pulmonologist wants to
                              be notified when his O2 rates hang out lower than 96%. I know some
                              kids' normal O2's are between 94-96%. I would just wait and see what
                              the Dr says. Good luck!! Dana and Cason

                              --- In Myotubular_Myopathy @yahoogroups. com, "rachel_wrigley"
                              <rachel_wrigley@ ...> wrote:
                              >
                              > just wanted to ask whats the normal rage for sats at night regan just
                              > had done i put the machine on 2 nights running and it never got over
                              92
                              > and the lowest was 89 is this normal i have the machine till tuesday
                              do
                              > i try again another night or should i leave and tell the nurses when
                              > there pick up the machine i hope there send the results to doc A S A
                              P
                              > thanks every one for reading it
                              > take care all
                              > Rachel
                              >
                              > i just wish i had a pulse oxymeter of my own hospital would let me
                              have
                              > one ive had to buy one from ebay which is a small finger one !!
                              >



                              Yahoo! Answers - Get better answers from someone who knows. Try it now.


                              For ideas on reducing your carbon footprint visit Yahoo! For Good this month.

                            • rachel wriglry
                              hi karen thankyou where are u from he dose have a nursing team that comes out every mth ones coming in the morning so pick up thr sats machine KAREN VARDY
                              Message 14 of 20 , Aug 27, 2007
                              • 0 Attachment
                                hi karen thankyou
                                where are u from he dose have a nursing team that comes out every mth ones coming in the morning so pick up thr sats machine

                                KAREN VARDY <karenvardy@...> wrote:
                                Rachel,
                                 
                                Do you have support from a commumity nursing team?
                                 
                                Ours were brilliant and arranged for all of these things. Granted we did have to use a lot of pressure to get these things- oxygen converter, a machine which converts normal air into pure oxygen, no need to get up in the middle of the night to change cylinders over, but does run off of your electricity supply. The cost of running it is reimbursed to you from the company who supply it, but you will need conventional oxygen cylinders in case of a power cut. Portable cylinders for emergency travel or bad days when you can still go out.
                                 
                                Our pulse ox meter was also a big fight, we did actually refuse to take jack home from hospital at one point, unless they gave us one as I was concerned about Jacks safety, especially as he was on BiPAP overnight!!! !!!
                                 
                                If I can help you in any way , let me know
                                 
                                Good luck.
                                 
                                Karen

                                rachel wriglry <rachel_wrigley@ yahoo.co. uk> wrote:
                                hi
                                im in the uk
                                we have asked for a pulse oxymeter when my other marconi was very ill we nearly lost him a few times and wanted one at home the hospital refused us one i even thought of writing to my local goverment for help but it would be a long draw out affair we also asked for a little bottle oxygen for the jorney the  to hospital we too was refused that we only got a suction machine after us kicking up a fuss we feel so let down by the hospital

                                "Spampinato, Rosemary" <spampinator@ ccbh.com> wrote:
                                My experience is that a NICU's acceptable low is 92 and some outpatient specialist agree low = 88. However, I agree with Dana. Each kiddo has their own baseline. I wouldn't be comfortable with not getting over 92 though.  I think it is imperative that you have a pulse oximeter to monitor yourself. Please tell me why you are unable to get one? I may have missed this explaination to the group. And, where do you live? I understand insurance and may be able to help.


                                From: Myotubular_Myopathy @yahoogroups. com [mailto:Myotubular_ Myopathy@ yahoogroups. com] On Behalf Of Dana
                                Sent: Friday, August 24, 2007 1:09 AM
                                To: Myotubular_Myopathy @yahoogroups. com
                                Subject: [Myotubular_ Myopathy] Re: over night sleep study !!!!!!

                                Hi Rachel!! From what I understand (and I could be wrong) every child
                                has their own "normal". Everytime Cason sees a new Dr they ask me what
                                Cason's normal O2 range is. Cason's normal is between 97-100%. Of
                                course when he is sick it is alot lower. Cason's Pulmonologist wants to
                                be notified when his O2 rates hang out lower than 96%. I know some
                                kids' normal O2's are between 94-96%. I would just wait and see what
                                the Dr says. Good luck!! Dana and Cason

                                --- In Myotubular_Myopathy @yahoogroups. com, "rachel_wrigley"
                                <rachel_wrigley@ ...> wrote:
                                >
                                > just wanted to ask whats the normal rage for sats at night regan just
                                > had done i put the machine on 2 nights running and it never got over
                                92
                                > and the lowest was 89 is this normal i have the machine till tuesday
                                do
                                > i try again another night or should i leave and tell the nurses when
                                > there pick up the machine i hope there send the results to doc A S A
                                P
                                > thanks every one for reading it
                                > take care all
                                > Rachel
                                >
                                > i just wish i had a pulse oxymeter of my own hospital would let me
                                have
                                > one ive had to buy one from ebay which is a small finger one !!
                                >



                                Yahoo! Answers - Get better answers from someone who knows. Try it now.


                                For ideas on reducing your carbon footprint visit Yahoo! For Good this month.


                                For ideas on reducing your carbon footprint visit Yahoo! For Good this month.

                              • KAREN VARDY
                                Hi Rachel, We live in Lancing which is down on the south coast between Brighton and Worthing. With the level of care and support that you need and have a right
                                Message 15 of 20 , Aug 28, 2007
                                • 0 Attachment
                                  Hi Rachel,
                                   
                                  We live in Lancing which is down on the south coast between Brighton and Worthing.
                                  With the level of care and support that you need and have a right to receive they should be available whenever you need them!!!
                                   
                                  I don't mean to brag but ours were around whenever we needed them we just had to ring them.
                                   
                                  Karen


                                  rachel wriglry <rachel_wrigley@...> wrote:
                                  hi karen thankyou
                                  where are u from he dose have a nursing team that comes out every mth ones coming in the morning so pick up thr sats machine

                                  KAREN VARDY <karenvardy@btintern et.com> wrote:
                                  Rachel,
                                   
                                  Do you have support from a commumity nursing team?
                                   
                                  Ours were brilliant and arranged for all of these things. Granted we did have to use a lot of pressure to get these things- oxygen converter, a machine which converts normal air into pure oxygen, no need to get up in the middle of the night to change cylinders over, but does run off of your electricity supply. The cost of running it is reimbursed to you from the company who supply it, but you will need conventional oxygen cylinders in case of a power cut. Portable cylinders for emergency travel or bad days when you can still go out.
                                   
                                  Our pulse ox meter was also a big fight, we did actually refuse to take jack home from hospital at one point, unless they gave us one as I was concerned about Jacks safety, especially as he was on BiPAP overnight!!! !!!
                                   
                                  If I can help you in any way , let me know
                                   
                                  Good luck.
                                   
                                  Karen

                                  rachel wriglry <rachel_wrigley@ yahoo.co. uk> wrote:
                                  hi
                                  im in the uk
                                  we have asked for a pulse oxymeter when my other marconi was very ill we nearly lost him a few times and wanted one at home the hospital refused us one i even thought of writing to my local goverment for help but it would be a long draw out affair we also asked for a little bottle oxygen for the jorney the  to hospital we too was refused that we only got a suction machine after us kicking up a fuss we feel so let down by the hospital

                                  "Spampinato, Rosemary" <spampinator@ ccbh.com> wrote:
                                  My experience is that a NICU's acceptable low is 92 and some outpatient specialist agree low = 88. However, I agree with Dana. Each kiddo has their own baseline. I wouldn't be comfortable with not getting over 92 though.  I think it is imperative that you have a pulse oximeter to monitor yourself. Please tell me why you are unable to get one? I may have missed this explaination to the group. And, where do you live? I understand insurance and may be able to help.


                                  From: Myotubular_Myopathy @yahoogroups. com [mailto:Myotubular_ Myopathy@ yahoogroups. com] On Behalf Of Dana
                                  Sent: Friday, August 24, 2007 1:09 AM
                                  To: Myotubular_Myopathy @yahoogroups. com
                                  Subject: [Myotubular_ Myopathy] Re: over night sleep study !!!!!!

                                  Hi Rachel!! From what I understand (and I could be wrong) every child
                                  has their own "normal". Everytime Cason sees a new Dr they ask me what
                                  Cason's normal O2 range is. Cason's normal is between 97-100%. Of
                                  course when he is sick it is alot lower. Cason's Pulmonologist wants to
                                  be notified when his O2 rates hang out lower than 96%. I know some
                                  kids' normal O2's are between 94-96%. I would just wait and see what
                                  the Dr says. Good luck!! Dana and Cason

                                  --- In Myotubular_Myopathy @yahoogroups. com, "rachel_wrigley"
                                  <rachel_wrigley@ ...> wrote:
                                  >
                                  > just wanted to ask whats the normal rage for sats at night regan just
                                  > had done i put the machine on 2 nights running and it never got over
                                  92
                                  > and the lowest was 89 is this normal i have the machine till tuesday
                                  do
                                  > i try again another night or should i leave and tell the nurses when
                                  > there pick up the machine i hope there send the results to doc A S A
                                  P
                                  > thanks every one for reading it
                                  > take care all
                                  > Rachel
                                  >
                                  > i just wish i had a pulse oxymeter of my own hospital would let me
                                  have
                                  > one ive had to buy one from ebay which is a small finger one !!
                                  >



                                  Yahoo! Answers - Get better answers from someone who knows. Try it now.


                                  For ideas on reducing your carbon footprint visit Yahoo! For Good this month.


                                  For ideas on reducing your carbon footprint visit Yahoo! For Good this month.


                                  Yahoo! Answers - Get better answers from someone who knows. Try it now.

                                • KAREN VARDY
                                  Rachel, Forgot to ask. Are you going to the MTM conference in London in September? Karen rachel wriglry wrote: hi karen thankyou
                                  Message 16 of 20 , Aug 28, 2007
                                  • 0 Attachment
                                    Rachel,
                                     
                                    Forgot to ask.
                                     
                                    Are you going to the MTM conference in London in September?
                                     
                                    Karen

                                    rachel wriglry <rachel_wrigley@...> wrote:
                                    hi karen thankyou
                                    where are u from he dose have a nursing team that comes out every mth ones coming in the morning so pick up thr sats machine

                                    KAREN VARDY <karenvardy@btintern et.com> wrote:
                                    Rachel,
                                     
                                    Do you have support from a commumity nursing team?
                                     
                                    Ours were brilliant and arranged for all of these things. Granted we did have to use a lot of pressure to get these things- oxygen converter, a machine which converts normal air into pure oxygen, no need to get up in the middle of the night to change cylinders over, but does run off of your electricity supply. The cost of running it is reimbursed to you from the company who supply it, but you will need conventional oxygen cylinders in case of a power cut. Portable cylinders for emergency travel or bad days when you can still go out.
                                     
                                    Our pulse ox meter was also a big fight, we did actually refuse to take jack home from hospital at one point, unless they gave us one as I was concerned about Jacks safety, especially as he was on BiPAP overnight!!! !!!
                                     
                                    If I can help you in any way , let me know
                                     
                                    Good luck.
                                     
                                    Karen

                                    rachel wriglry <rachel_wrigley@ yahoo.co. uk> wrote:
                                    hi
                                    im in the uk
                                    we have asked for a pulse oxymeter when my other marconi was very ill we nearly lost him a few times and wanted one at home the hospital refused us one i even thought of writing to my local goverment for help but it would be a long draw out affair we also asked for a little bottle oxygen for the jorney the  to hospital we too was refused that we only got a suction machine after us kicking up a fuss we feel so let down by the hospital

                                    "Spampinato, Rosemary" <spampinator@ ccbh.com> wrote:
                                    My experience is that a NICU's acceptable low is 92 and some outpatient specialist agree low = 88. However, I agree with Dana. Each kiddo has their own baseline. I wouldn't be comfortable with not getting over 92 though.  I think it is imperative that you have a pulse oximeter to monitor yourself. Please tell me why you are unable to get one? I may have missed this explaination to the group. And, where do you live? I understand insurance and may be able to help.


                                    From: Myotubular_Myopathy @yahoogroups. com [mailto:Myotubular_ Myopathy@ yahoogroups. com] On Behalf Of Dana
                                    Sent: Friday, August 24, 2007 1:09 AM
                                    To: Myotubular_Myopathy @yahoogroups. com
                                    Subject: [Myotubular_ Myopathy] Re: over night sleep study !!!!!!

                                    Hi Rachel!! From what I understand (and I could be wrong) every child
                                    has their own "normal". Everytime Cason sees a new Dr they ask me what
                                    Cason's normal O2 range is. Cason's normal is between 97-100%. Of
                                    course when he is sick it is alot lower. Cason's Pulmonologist wants to
                                    be notified when his O2 rates hang out lower than 96%. I know some
                                    kids' normal O2's are between 94-96%. I would just wait and see what
                                    the Dr says. Good luck!! Dana and Cason

                                    --- In Myotubular_Myopathy @yahoogroups. com, "rachel_wrigley"
                                    <rachel_wrigley@ ...> wrote:
                                    >
                                    > just wanted to ask whats the normal rage for sats at night regan just
                                    > had done i put the machine on 2 nights running and it never got over
                                    92
                                    > and the lowest was 89 is this normal i have the machine till tuesday
                                    do
                                    > i try again another night or should i leave and tell the nurses when
                                    > there pick up the machine i hope there send the results to doc A S A
                                    P
                                    > thanks every one for reading it
                                    > take care all
                                    > Rachel
                                    >
                                    > i just wish i had a pulse oxymeter of my own hospital would let me
                                    have
                                    > one ive had to buy one from ebay which is a small finger one !!
                                    >



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                                  • wendyhughes@btconnect.com
                                    Hi Rachel, just picked up on these emails. I think you said you are trying to get a referral to Prof Muntoni’s team at Hammersmith Hospital. They will also
                                    Message 17 of 20 , Aug 28, 2007
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                                    • rachel wriglry
                                      hi wendy thanks for the email ill talk to you on person when we meet in september about who to write to im been thinking there might not give us these things
                                      Message 18 of 20 , Aug 28, 2007
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                                        hi wendy
                                        thanks for the email ill talk  to you on person when we meet in september about who to write to im been thinking there might not give us these things as the boys are getting better

                                        wendyhughes@... wrote:
                                        Hi Rachel, just picked up on these emails.  I think you said you are trying to get a referral to Prof Muntoni’s team at Hammersmith Hospital.  They will also be able to help with these items as they will write to your local PCT (primary care trust) and can request that your children have them. (This is prime example when its good to be connected with a specialist doctor/hospital) .
                                        We can of course, also write from the Myotubular Trust too.  Let me know (on personal email) who you need us to write to and what you need exactly and we’ll do our best for you.
                                        Hope this is helpful.
                                        Take care, Wendy
                                        -----Original Message-----
                                        From: Myotubular_Myopathy @yahoogroups. com [mailto:Myotubular_ Myopathy@ yahoogroups. com] On Behalf Of KAREN VARDY
                                        Sent:
                                        28 August 2007 20:52
                                        To: Myotubular_Myopathy @yahoogroups. com
                                        Subject: RE: [Myotubular_ Myopathy] Re: over night sleep study !!!!!!
                                        Hi Rachel,
                                        We live in Lancing which is down on the south coast between Brighton and Worthing.
                                        With the level of care and support that you need and have a right to receive they should be available whenever you need them!!!
                                        I don't mean to brag but ours were around whenever we needed them we just had to ring them.
                                        Karen


                                        rachel wriglry <rachel_wrigley@ yahoo.co. uk> wrote:
                                        hi karen thankyou
                                        where are u from he dose have a nursing team that comes out every mth ones coming in the morning so pick up thr sats machine

                                        KAREN VARDY <karenvardy@btintern et.com> wrote:
                                        Rachel,
                                        Do you have support from a commumity nursing team?
                                        Ours were brilliant and arranged for all of these things. Granted we did have to use a lot of pressure to get these things- oxygen converter, a machine which converts normal air into pure oxygen, no need to get up in the middle of the night to change cylinders over, but does run off of your electricity supply. The cost of running it is reimbursed to you from the company who supply it, but you will need conventional oxygen cylinders in case of a power cut. Portable cylinders for emergency travel or bad days when you can still go out.
                                        Our pulse ox meter was also a big fight, we did actually refuse to take jack home from hospital at one point, unless they gave us one as I was concerned about Jacks safety, especially as he was on BiPAP overnight!!! !!!
                                        If I can help you in any way , let me know
                                        Good luck.
                                        Karen

                                        rachel wriglry <rachel_wrigley@ yahoo.co. uk> wrote:
                                        hi
                                        im in the uk
                                        we have asked for a pulse oxymeter when my other marconi was very ill we nearly lost him a few times and wanted one at home the hospital refused us one i even thought of writing to my local goverment for help but it would be a long draw out affair we also asked for a little bottle oxygen for the jorney the  to hospital we too was refused that we only got ! a suction machine after us kicking up a fuss we feel so let down by the hospital

                                        "Spampinato, Rosemary" <spampinator@ ccbh.com> wrote:
                                        My experience is that a NICU's acceptable low is 92 and some outpatient specialist agree low = 88. However, I agree with Dana. Each kiddo has their own baseline. I wouldn't be comfortable with not getting over 92 though.  I think it is imperative that you have a pulse oximeter to monitor yourself. Please tell me why you are unable to get one? I may have missed this explaination to the group. And, where do you live? I understand insurance and may be able to help.

                                        From: Myotubular_Myopathy @yahoogroups. com [mailto:Myotubular_ Myopathy@ yahoogroups. com] On Behalf Of Dana
                                        Sent: Friday, August 24, 2007 1:09 AM
                                        To: Myotubular_Myopathy @yahoogroups. com
                                        Subject: [Myotubular_ Myopathy] Re: over night sleep study !!!!!!
                                        Hi Rachel!! From what I understand (and I could be wrong) every child
                                        has their own "normal". Everytime Cason sees a new Dr they ask me what
                                        Cason's normal O2 range is. Cason's normal is between 97-100%. Of
                                        course when he is sick it is alot lower. Cason's Pulmonologist wants to
                                        be notified when his O2 rates hang out lower than 96%. I know some
                                        kids' normal O2's are between 94-96%. I would just wait and see what
                                        the Dr says. Good luck!! Dana and Cason

                                        --- In Myotubular_Myopathy @yahoogroups. com, "rachel_wrigley"
                                        <rachel_wrigley@ ...> wrote:
                                        >
                                        > just wanted to ask whats the normal rage for sats at night regan just
                                        > had done i put the machine on 2 nights running and it never got over
                                        92
                                        > and the lowest was 89 is this normal i have the machine till tuesday
                                        do
                                        > i try again another night or should i leave and tell the nurses when
                                        > there pick up the machine i hope there send the results to doc A S A
                                        P
                                        > thanks every one for reading it
                                        > take care all
                                        > Rachel
                                        >
                                        > i just wish i had a pulse oxymeter of my own hospital would let me
                                        have
                                        > one ive had to buy one from ebay which is a small finger one !!
                                        >

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                                      • burcu paltura
                                        Hello Rachel, We too had to fight a lot for a pulse ox and a suction machine but we were refused and we had to get them immediately otherwise we were not
                                        Message 19 of 20 , Aug 29, 2007
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                                          Hello Rachel,
                                          We too had to fight a lot for a pulse ox and a suction machine but we were refused and we had to get them immediately otherwise we were not allowed to get Ilker out of the neo natal unit. So we had to buy them; no one seemed to care about the vital importance of such equipments here. But we were able to get an oxgygen concentrator/convertor and a bi-pap machine after 2 months of struggle. Well I guess this time the doctors saw that Ilker's sats were below 85's most of the time -because of his right lung collapse due to aspiration- and they were afraid that something bad might have happened after they let us go home from the hospital -where Ilker had to stay for 10 days to set the correct pressure levels for bi-pap and give IV antibiotics. So they signed the relevant docs so that we take our equipments from the government. Also doctors told me that we have to let them know when his sats are below 94 so it seems that this number is like a threshold level-at least for Ilker. But I guess the optimum sat level should be between 97-100. Of course this range is very hard to achieve when there is some illness. Yesterday Ilker's sats went down to 89-91 level and at night he had a fever so we called the doctor and we will go today. So sats around 90s is absolutely not normal and when fever is added it is a sign for us that Ilker's lung problem which bobed out 2 and a half months ago is not improving but getting worse.
                                          Eventually here in our country we have a lot of insurance, support and funding problems all added to the inadequate proffessionals like docs and nurses never heard of mtm before. But it shouldn't be there in UK! and that's why I am coming to the family conference -to get what I can't get in here - help! that is some consultancy from proffessionals, information and advices from families...I had so many help and advices from this group whenever I felt lost-thanks to their good heart. I hope the guidance they provided to you concerning the oximeter dilema will work out for you.  
                                          Anyway I hope you can get whatever you need soon but I really hope that you will never need them desperately but only to check time to time for your own contentment.
                                          Good luck and bless you and your kids and hope to see you at the family meeting.
                                          Best Regards,
                                          Burcu
                                           
                                           


                                          rachel_wrigley <rachel_wrigley@...> wrote:
                                          just wanted to ask whats the normal rage for sats at night regan just
                                          had done i put the machine on 2 nights running and it never got over 92
                                          and the lowest was 89 is this normal i have the machine till tuesday do
                                          i try again another night or should i leave and tell the nurses when
                                          there pick up the machine i hope there send the results to doc A S A P
                                          thanks every one for reading it
                                          take care all
                                          Rachel

                                          i just wish i had a pulse oxymeter of my own hospital would let me have
                                          one ive had to buy one from ebay which is a small finger one !!



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                                        • Pat or Sarah
                                          Hi Rachel, I am just catching up on yahoo posts. I saw your inquiry about normal night time sats. I have hear that even in typical people O2 sats can drop in
                                          Message 20 of 20 , Sep 3, 2007
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                                            Hi Rachel,
                                            I am just catching up on yahoo posts.  I saw your inquiry about normal night time sats.  I have hear that even in typical people O2 sats can drop in to the high 80's.  Our doctor stressed to us the importance of measuring CO2 by nasal capnograph as being important also.  I vaguely remember him saying that CO2 should be below 40 but I cannot remember exactly.  I know Adam spiraled up to a max of 54 so we determined that he needed nasal IPPV.  Take care.  Sarah
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