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update on marconi!!!

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  • rachel_wrigley
    hes doing well we went to the seating clinic the other day to get him another chair its really nice its called squiggles we are just waiting for the hospital
    Message 1 of 10 , May 3, 2007
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      hes doing well we went to the seating clinic the other day to get him
      another chair its really nice its called squiggles we are just waiting
      for the hospital to accept the quote if there dont say yes we will be
      very disapointted and might have to end up paying it our self as it is
      what marconi really need to help his back we have nocited his back
      starting to curve we just hoping with chair will do him good he look
      very comfortable in it fingers crossed the hospiatl says yes

      takecare every and my thought and wishes are with you all

      Rachel&Boys
    • Wendy
      Hi Rachel, I noticed in your email that you said you might have to pay for the seating yourself. I think the hospital trust will have to buy or lend you this
      Message 2 of 10 , May 3, 2007
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        Hi Rachel,

        I noticed in your email that you said you might have to pay for the seating yourself… I think the hospital trust will have to buy or lend you this chair (it will be considered as a piece of medical equipment essential for preventing scoliosis). If not let me know and I will be happy to help you by writing a letter of support from the charity about why it’s needed…. But in my experience and understanding, it’s their duty to supply proper seating to help prevent things like scoliosis.  If you are based at The Hammersmith – they will also support that in writing if you tell them about it (one of the benefits of b

        (Message over 64 KB, truncated)

      • rachel_wrigley
        we have been to see the doctors today at the hospiatl marconi now need a gastrostomy we have to see the surgeon in about 4 mths i would love advice on this plz
        Message 3 of 10 , Jul 17, 2007
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          we have been to see the doctors today at the hospiatl marconi now need
          a gastrostomy we have to see the surgeon in about 4 mths i would love
          advice on this plz if anyones willing to tell me anything im new to all
          this i thought he would never need it !!! my minds blow away with it
          all.im not sure how to take the news is it a good thing or bad thing i
          know its going to be better then the ng tube as its marking his
          beauitful face it will be good to see him with out it a few questions
          1. how did your young ones cope with the anasectic
          2. how long was there in the hospital
          3. how do there cope with it

          thanks again for all your advice
          take care all
          Rcahel&Boys
        • Scott & Betsy Grant
          Dear Rachel, I remember when Kyle had his g-tube placed. Remember the worry is all on you, but he s not worried!:) He ll do fine. I don t think Kyle suffered
          Message 4 of 10 , Jul 17, 2007
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            Dear Rachel,
            I remember when Kyle had his g-tube placed. Remember the worry is all on you, but he's not worried!:) He'll do fine. I don't think Kyle suffered from the anesthetic at all. It made it all seem so much easier to manage after that was done. He'll be so much more comfortable not having the NG tube in his nose and going down his throat. It's also much safer knowing that the feeding is going in the right place every time. Kyle also had a Nissan, is that being discussed?
            Betsy

             
            On 7/17/07, rachel_wrigley <rachel_wrigley@...> wrote:

            we have been to see the doctors today at the hospiatl marconi now need
            a gastrostomy we have to see the surgeon in about 4 mths i would love
            advice on this plz if anyones willing to tell me anything im new to all
            this i thought he would never need it !!! my minds blow away with it
            all.im not sure how to take the news is it a good thing or bad thing i
            know its going to be better then the ng tube as its marking his
            beauitful face it will be good to see him with out it a few questions
            1. how did your young ones cope with the anasectic
            2. how long was there in the hospital
            3. how do there cope with it

            thanks again for all your advice
            take care all
            Rcahel&Boys


          • Abbie harrison
            Rachel, Kaylee has had her Mickey button since she was three weeks old in the NICU. She was released from the hospital at four weeks old, but there were still
            Message 5 of 10 , Jul 17, 2007
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              Rachel,
              Kaylee has had her Mickey button since she was three weeks old in the NICU.  She was released from the hospital at four weeks old, but there were still some other issues being worked out.  So I am not sure how long she would have had to stay otherwise.  The mickey has been great for us.  You dont see it unless she is naked.  It does not get in the way of her carseat belts and it does not bother her.  She plays with it from time to time but has never puleed it out or anything.  Changing it is really easy and we do that at home with no complications.  For her, the put in a foley catheter type tube first, stitched in place so as not to come out.  Then we had to take her back to the surgeons office like a week or two later and that is when they put in the actual Mickey Button.  I honestly do not know how you have gone this long with a NG tube.  Kaylee did just fine with the anesthia and there were no complications.  I reassure you that having a Mickey placed will be so much easier for you guys.  I am not sure how often you have to change the NG tube, but with Kaylee mickey button, we only have to change it like every 3-6 months, if it gets to leaking from the actual tube.  Other than that we pretty much just leave it alone!
              I hope this helps and reassures you a little bit.
              Good luck!
              Abbie Howeth

              rachel_wrigley <rachel_wrigley@...> wrote:
              we have been to see the doctors today at the hospiatl marconi now need
              a gastrostomy we have to see the surgeon in about 4 mths i would love
              advice on this plz if anyones willing to tell me anything im new to all
              this i thought he would never need it !!! my minds blow away with it
              all.im not sure how to take the news is it a good thing or bad thing i
              know its going to be better then the ng tube as its marking his
              beauitful face it will be good to see him with out it a few questions
              1. how did your young ones cope with the anasectic
              2. how long was there in the hospital
              3. how do there cope with it

              thanks again for all your advice
              take care all
              Rcahel&Boys


            • Spampinato, Rosemary
              Thank God for Mickey Buttons! We could have saved our twins a month in the hospital had we gotten them G tubes earlier. We were scared but, we re so over it.
              Message 6 of 10 , Jul 17, 2007
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                Thank God for Mickey Buttons! We could have saved our twins a month in the hospital had we gotten them G tubes earlier.  We were scared but, we're so over it. Tehy've saved our boys lives.  It look one time of the NG tube being accidently placed in the one of the twin's lungs and then being fed 10 cc of formula into his lungs to convince us he needed the G Tube once and for all - no matter if we were scared or not.
                 
                Go for it.
                 
                 


                From: Myotubular_Myopathy@yahoogroups.com [mailto:Myotubular_Myopathy@yahoogroups.com] On Behalf Of Scott & Betsy Grant
                Sent: Tuesday, July 17, 2007 11:32 AM
                To: Myotubular_Myopathy@yahoogroups.com
                Subject: Re: [Myotubular_Myopathy] update on marconi!!!

                Dear Rachel,
                I remember when Kyle had his g-tube placed. Remember the worry is all on you, but he's not worried!:) He'll do fine. I don't think Kyle suffered from the anesthetic at all. It made it all seem so much easier to manage after that was done. He'll be so much more comfortable not having the NG tube in his nose and going down his throat. It's also much safer knowing that the feeding is going in the right place every time. Kyle also had a Nissan, is that being discussed?
                Betsy

                 
                On 7/17/07, rachel_wrigley <rachel_wrigley@ yahoo.co. uk> wrote:

                we have been to see the doctors today at the hospiatl marconi now need
                a gastrostomy we have to see the surgeon in about 4 mths i would love
                advice on this plz if anyones willing to tell me anything im new to all
                this i thought he would never need it !!! my minds blow away with it
                all.im not sure how to take the news is it a good thing or bad thing i
                know its going to be better then the ng tube as its marking his
                beauitful face it will be good to see him with out it a few questions
                1. how did your young ones cope with the anasectic
                2. how long was there in the hospital
                3. how do there cope with it

                thanks again for all your advice
                take care all
                Rcahel&Boys


              • Elizabeth Peil
                Chaz has done very well with his g-tube. He has a mickey button but started out with a different type in order for the track to form. Once it was healed
                Message 7 of 10 , Jul 17, 2007
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                  Chaz has done very well with his g-tube.  He has a mickey button but started out with a different type in order for the track to form.  Once it was healed nicely we brought him back in and they placed the mickey.  Like I read in another email, he is totally fine with it.  He does pull on it from time to time but has never pulled it out.  We replace it at home as needed.  It is really easy, kind of scary at first, but really easy.  After the first time you do it you will be like an old pro.  It has worked wonderfully for us.  He was so skinny his first year, 12lbs 9oz at 11 1/2 months old.  Once he got his tube placed he plumped up very quickly and he became much more active.  We were so aprehensive at first but it turned out to be wonderful for him.  He had a nysin done 4 months afterwards also because of the way the gtube changed the way he was eating he started to reflux.  Now he does very very well.  As for the anestesia.  Chaz has went under quite a few times.  I dont want to scare you, but he did have an issue once with it when he had his nysin done.  I dont believe however that it was due to the anestisia, I think it was due to the morphine  pump that they had him on.  I think it relaxed him too much and he had both lungs close almost completely.  He did recover quickly after that though.  I think the whole process that was suppose to take two days ended up being 8.  They put him on bi-pap right away and he bounced back very quickly.  For whatever reason that time he just didnt do too well.  I hope I didnt scare you too much.  Good luck.  All the best to you and your family. 
                   
                  Liz
                   
                   

                  rachel_wrigley <rachel_wrigley@...> wrote:
                  we have been to see the doctors today at the hospiatl marconi now need
                  a gastrostomy we have to see the surgeon in about 4 mths i would love
                  advice on this plz if anyones willing to tell me anything im new to all
                  this i thought he would never need it !!! my minds blow away with it
                  all.im not sure how to take the news is it a good thing or bad thing i
                  know its going to be better then the ng tube as its marking his
                  beauitful face it will be good to see him with out it a few questions
                  1. how did your young ones cope with the anasectic
                  2. how long was there in the hospital
                  3. how do there cope with it

                  thanks again for all your advice
                  take care all
                  Rcahel&Boys



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                • rachel_wrigley
                  hi thanks for getting bk in touch with me no the nissan hasnt been desussed as yet - In Myotubular_Myopathy@yahoogroups.com, Scott & Bets ... all on ...
                  Message 8 of 10 , Jul 17, 2007
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                    hi thanks for getting bk in touch with me no the nissan hasnt been
                    desussed as yet



                    - In Myotubular_Myopathy@yahoogroups.com, "Scott & Bets

                    y Grant" <scottnbets@...> wrote:
                    >
                    > Dear Rachel,
                    > I remember when Kyle had his g-tube placed. Remember the worry is
                    all on
                    > you, but he's not worried!:) He'll do fine. I don't think Kyle
                    suffered from
                    > the anesthetic at all. It made it all seem so much easier to manage
                    after
                    > that was done. He'll be so much more comfortable not having the NG
                    tube in
                    > his nose and going down his throat. It's also much safer knowing
                    that the
                    > feeding is going in the right place every time. Kyle also had a
                    Nissan, is
                    > that being discussed?
                    > Betsy
                    >
                    >
                    > On 7/17/07, rachel_wrigley <rachel_wrigley@...> wrote:
                    > >
                    > > we have been to see the doctors today at the hospiatl marconi
                    now need
                    > > a gastrostomy we have to see the surgeon in about 4 mths i would
                    love
                    > > advice on this plz if anyones willing to tell me anything im new
                    to all
                    > > this i thought he would never need it !!! my minds blow away with
                    it
                    > > all.im not sure how to take the news is it a good thing or bad
                    thing i
                    > > know its going to be better then the ng tube as its marking his
                    > > beauitful face it will be good to see him with out it a few
                    questions
                    > > 1. how did your young ones cope with the anasectic
                    > > 2. how long was there in the hospital
                    > > 3. how do there cope with it
                    > >
                    > > thanks again for all your advice
                    > > take care all
                    > > Rcahel&Boys
                    > >
                    > >
                    > >
                    >
                  • rachel_wrigley
                    just thought id let u know that he seems a lot better today his bubbly chest has gone hes been coughing a few times but nothing bad it will be nice to put his
                    Message 9 of 10 , Oct 22, 2007
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                      just thought id let u know that he seems a lot better today his bubbly
                      chest has gone hes been coughing a few times but nothing bad it will be
                      nice to put his milk bk up and put the suction machine away he hated it
                      i had to wrap him in a blanket to stop him struggleing with me i bought
                      a little robot for being a brave little man i carnt beleave how much
                      our boys have gone through i dont think i would be brave eough lol well
                      done little boys im so glad we have kept him out of hospital the last
                      time he was in feb 2006 and that was only a few days stay i think it
                      was 4 days and sent home on antibotics he has been close to going in a
                      few times but hasnt my boys have a full week of school as its the half
                      term im dreading it lol
                      keep up the good work every work
                      and take care
                      Rachel
                    • Sheallyn
                      good for you Marconi!! Our boys really are tough aren t they? They have endured things I m not sure I could and that makes me such a proud mother and friend
                      Message 10 of 10 , Oct 29, 2007
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                        good for you Marconi!! Our boys really are tough aren't they? They
                        have endured things I'm not sure I could and that makes me such a
                        proud mother and friend :<)

                        So happy to hear he is feeling better!!
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