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  • Wright, Janice (J)
    Hi All, Got into work this morning and spend a good half hour reading all the messages. It is so great to hear all the news. It is so inspirational to see
    Message 1 of 7 , Jul 26, 2004
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      Hi All,
       
      Got into work this morning and spend a good half hour reading all the messages. It is so great to hear all the news.  It is so inspirational to see what everyone is up to.  Actually I am quite jealous re the LTV. Alistair and I were quite keen to get one when we first moved Matthew home. It was too expensive because of the exchange rate and that the Medical Aid did not cover the cost of the vent.  The one we got works brilliantly though but weighs 14kg and it's internal battery only lasts about 45 minutes.  We actually had to design the Shona Buggy around the weight of the vent and car battery.
       
      Matthew doesn't have the desatting episodes but if he does desat, it is normally just a plug (even small ones can affect him). We saw our trachea rep last week and she wants to replace his trachea. The one we put in in December had the cuff fail, and they feel this is a breeding ground for infections. They want to put in a new one on Wednesday (at Home!!!). It does not move from side to side like his current one, but is apparently more comfortable to wear longer term. Apparently the tube that goes into the stoma is quite soft and gets softer with his body heat. We are a bit scared as they suggest that we change the inner cannular daily (we already do this), but change the actual trachea every month. The rep said that it is like changing a earring! Very scared. I would like to take him in as an out patient to the hospital just to be safe!
       
      By the way the hospital that we normally take Matthew to is apparently going into liquidation.  Alistair will check this out with one of his friends who is a Doctor there.  A bit sad if this is so as we have developed a relationship with the people there and both my children were born there.
       
      Amanda - it is so great to hear about Jacob, it is testament again that these kids get stronger as they grow older.
       
      Not sure if we told you, but I did get my new (second hand) car. It is a Chrysler Voyager (Town and Country in the USA). It is a seven seater and the two middle chairs are removable. We take them out, wheel Matthew in, and away we go. It is so exciting. I made a goal in March that Matthew would be an active and mobile part of our lives, and this is really coming true. On Saturday we watched rugby in our lounge with our friends and Matthew was there. Not used to having a nurse there though, so in future I will ask them to bring something to do and they can sit in the bedroom while we interact with Matthew.
       
      Keep well all and stay strong.
       
      Janice, Al and Matthew


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    • ANN MILLER
      MessageHi Janice, Alstair and Matthew, Glad to hear Matthew is getting around so well. It s great being able to go places as a family. Im sure Matthew enjoys
      Message 2 of 7 , Jul 26, 2004
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        Hi Janice, Alstair and Matthew,
         
        Glad to hear Matthew is getting around so well.  It's great being able to go places as a family.  Im sure Matthew enjoys going places and meeting new people as much as Kyle does. 
         
        We had to have Kyles Kid Cart tray specially made to fit his old LP10 vent also.  It will be great having a smaller vent.  
         
        What type of trach does Matthew have?  There is a web site: www.tracheostomy.com that has a site about changing/cleaning trachs,  I really liked it.  It helped me when I started changing Kyles trachs myself.  I even told his doctor about it and she has the web site posted on the bulletin board in her office.  We change Kyles trach weekly.
        He has a Shiley Ped 4.0, but his doctor wants to get him back down to a 3.5 which he says will help him talk more.  He should be able to get more air to the vocal cords with a smaller trach.
         
        Take care,
         
        Darlene
         
         
         
        ----- Original Message -----
        Sent: Monday, July 26, 2004 3:07 AM
        Subject: [Myotubular_Myopathy] News

        Hi All,
         
        Got into work this morning and spend a good half hour reading all the messages. It is so great to hear all the news.  It is so inspirational to see what everyone is up to.  Actually I am quite jealous re the LTV. Alistair and I were quite keen to get one when we first moved Matthew home. It was too expensive because of the exchange rate and that the Medical Aid did not cover the cost of the vent.  The one we got works brilliantly though but weighs 14kg and it's internal battery only lasts about 45 minutes.  We actually had to design the Shona Buggy around the weight of the vent and car battery.
         
        Matthew doesn't have the desatting episodes but if he does desat, it is normally just a plug (even small ones can affect him). We saw our trachea rep last week and she wants to replace his trachea. The one we put in in December had the cuff fail, and they feel this is a breeding ground for infections. They want to put in a new one on Wednesday (at Home!!!). It does not move from side to side like his current one, but is apparently more comfortable to wear longer term. Apparently the tube that goes into the stoma is quite soft and gets softer with his body heat. We are a bit scared as they suggest that we change the inner cannular daily (we already do this), but change the actual trachea every month. The rep said that it is like changing a earring! Very scared. I would like to take him in as an out patient to the hospital just to be safe!
         
        By the way the hospital that we normally take Matthew to is apparently going into liquidation.  Alistair will check this out with one of his friends who is a Doctor there.  A bit sad if this is so as we have developed a relationship with the people there and both my children were born there.
         
        Amanda - it is so great to hear about Jacob, it is testament again that these kids get stronger as they grow older.
         
        Not sure if we told you, but I did get my new (second hand) car. It is a Chrysler Voyager (Town and Country in the USA). It is a seven seater and the two middle chairs are removable. We take them out, wheel Matthew in, and away we go. It is so exciting. I made a goal in March that Matthew would be an active and mobile part of our lives, and this is really coming true. On Saturday we watched rugby in our lounge with our friends and Matthew was there. Not used to having a nurse there though, so in future I will ask them to bring something to do and they can sit in the bedroom while we interact with Matthew.
         
        Keep well all and stay strong.
         
        Janice, Al and Matthew


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      • connie guinn
        Janice, Hi! It s good to hear from you again! That is so great that you are able to make Matthew be a mobile part of the family, now- that must be so nice!!
        Message 3 of 7 , Jul 31, 2004
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          Janice,
          Hi!  It's good to hear from you again!  That is so great that you are able to make Matthew be a mobile part of the family, now- that must be so nice!!  We are still trying to get a vehicle that can transport Benjamin and his w/c and all the equipment, too. I can't wait to get to that point, too!!
           
          Prior to the new trach for Matthew, how often have you had to change his trach?  We change Benjamin's once a month, too.  It was a little intimidating, at first, but now it is old hat!
           
          That is sad about the hospital...  
           
          How is everyone doing?  We are all ok, here. 
          Take care,
          -Connie

          "Wright, Janice (J)" <janice.wright@...> wrote:
          Hi All,
           
          Got into work this morning and spend a good half hour reading all the messages. It is so great to hear all the news.  It is so inspirational to see what everyone is up to.  Actually I am quite jealous re the LTV. Alistair and I were quite keen to get one when we first moved Matthew home. It was too expensive because of the exchange rate and that the Medical Aid did not cover the cost of the vent.  The one we got works brilliantly though but weighs 14kg and it's internal battery only lasts about 45 minutes.  We actually had to design the Shona Buggy around the weight of the vent and car battery.
           
          Matthew doesn't have the desatting episodes but if he does desat, it is normally just a plug (even small ones can affect him). We saw our trachea rep last week and she wants to replace his trachea. The one we put in in December had the cuff fail, and they feel this is a breeding ground for infections. They want to put in a new one on Wednesday (at Home!!!). It does not move from side to side like his current one, but is apparently more comfortable to wear longer term. Apparently the tube that goes into the stoma is quite soft and gets softer with his body heat. We are a bit scared as they suggest that we change the inner cannular daily (we already do this), but change the actual trachea every month. The rep said that it is like changing a earring! Very scared. I would like to take him in as an out patient to the hospital just to be safe!
           
          By the way the hospital that we normally take Matthew to is apparently going into liquidation.  Alistair will check this out with one of his friends who is a Doctor there.  A bit sad if this is so as we have developed a relationship with the people there and both my children were born there.
           
          Amanda - it is so great to hear about Jacob, it is testament again that these kids get stronger as they grow older.
           
          Not sure if we told you, but I did get my new (second hand) car. It is a Chrysler Voyager (Town and Country in the USA). It is a seven seater and the two middle chairs are removable. We take them out, wheel Matthew in, and away we go. It is so exciting. I made a goal in March that Matthew would be an active and mobile part of our lives, and this is really coming true. On Saturday we watched rugby in our lounge with our friends and Matthew was there. Not used to having a nurse there though, so in future I will ask them to bring something to do and they can sit in the bedroom while we interact with Matthew.
           
          Keep well all and stay strong.
           
          Janice, Al and Matthew


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        • Wright, Janice (J)
          Hi Connie, Thanks for the message. We got Matthew s previous trach at the end of December last year. It was the first time that he had an inner cannula. We
          Message 4 of 7 , Aug 2, 2004
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            Hi Connie,
            Thanks for the message. We got Matthew's previous trach at the end of December last year. It was the first time that he had an inner cannula.  We were changing his inner cannula every third day. However, when the cuff packed up there were a lot of secretions trapped and the smell was horrendous. We ended up changing the inner every day.  We then saw a new rep and she was horrified that we don't change the actual trach every month. It was on her suggestion that we put a new trach in. She wanted to do it at home and we said no-way! Thank goodness we took Matthew to hospital cos he absolutely crashed. He had an elevated heart rate the whole day as he was aware that we were going to take him to hospital for the procedure. We gave him Dormicam at the hospital, but he continued to stress. We had the Dr on standby and proceeded with trying to change the trach. The new trach was way too small and Matthew crashed. The vent defaulted (correctly so) to zero peep as it sensed that it was over ventilating him. It was pushing all the air into him and it was escaping past the trach. We then bagged him on the new trach and tried to phone the Dr, but guess what - you are not allowed to phone out from the hospital room and you have to have a pin number to use the phone. People were screaming up the corridor - call the Dr, call the Dr. It would have been funny if it was not so scary. They put the next size trach in, but it was also too small. Eventually they tried to get one from the OR or emergency room, but guess what - they didn't have paediatric trachs in stock - what a circus. Eventually the rep found a trach that was similar to the one he had previously, but without the cuff. Once we put this in, Matthew looked up at all of us and said, "Daarsy" which means "there you are!" Everyone packed up laughing. Matthew knows what he wants and when we put in the trach he was comfortable with - he let us know. What a trooper - to go from blue to chatting in 20 seconds.
             
            I had promised him that he was not going to stay at the hospital, and as soon as he stabilised, I took him home. The trach is a little too small, but he and the vent are coping. We plan to change it in a months time, and set up a protocol of changing it every month. He has had no side effects from the incident and is very chirpy and is in a fantastic mood. When I left this morning he was singing along to the Teletubbies and saying Big Hugs - so hopefully we did the right thing.
             
            From what I read on the Tracheostomy site, it is normal to change the trach every month. We are also setting up a protocol of changing the G Tube every month. It is very scary for us, and I am not looking forward to doing it the first time on our own,  but I was also terrified to suction Matthew the first time, and now I do it with my eyes closed!
             
            Matthew has been unusually well this winter (touch wood) so I am sure that changing the cannula daily and neb'ing him with Atrovent every day is the right thing.
             
            Also some excellent news for us is that Matthew has started to take liquid orally. His speech therapist went to a conference on managing kids with trachs, and has given us a whole set of exercises that we have to do for him and we have to try and desensitise his mouth. We are very excited that he is able to take about 5 mls and seems to enjoy it. He even holds the bottle himself. Its quite awesome to see after all this time, my kid with a bottle in his hand.
             
            Apart from the hospital and back, we haven't been out and about in the car again, but he is still out and about in his buggy.
             
            Keep well and hope everything continues to go well for you and Benjamin.
             
            Cheers Janice
             
             
            -----Original Message-----
            From: connie guinn [mailto:kookla_g@...]
            Sent: 01 August 2004 05:46
            To: Myotubular_Myopathy@yahoogroups.com
            Subject: Re: [Myotubular_Myopathy] News

            Janice,
            Hi!  It's good to hear from you again!  That is so great that you are able to make Matthew be a mobile part of the family, now- that must be so nice!!  We are still trying to get a vehicle that can transport Benjamin and his w/c and all the equipment, too. I can't wait to get to that point, too!!
             
            Prior to the new trach for Matthew, how often have you had to change his trach?  We change Benjamin's once a month, too.  It was a little intimidating, at first, but now it is old hat!
             
            That is sad about the hospital...  
             
            How is everyone doing?  We are all ok, here. 
            Take care,
            -Connie

            "Wright, Janice (J)" <janice.wright@...> wrote:
            Hi All,
             
            Got into work this morning and spend a good half hour reading all the messages. It is so great to hear all the news.  It is so inspirational to see what everyone is up to.  Actually I am quite jealous re the LTV. Alistair and I were quite keen to get one when we first moved Matthew home. It was too expensive because of the exchange rate and that the Medical Aid did not cover the cost of the vent.  The one we got works brilliantly though but weighs 14kg and it's internal battery only lasts about 45 minutes.  We actually had to design the Shona Buggy around the weight of the vent and car battery.
             
            Matthew doesn't have the desatting episodes but if he does desat, it is normally just a plug (even small ones can affect him). We saw our trachea rep last week and she wants to replace his trachea. The one we put in in December had the cuff fail, and they feel this is a breeding ground for infections. They want to put in a new one on Wednesday (at Home!!!). It does not move from side to side like his current one, but is apparently more comfortable to wear longer term. Apparently the tube that goes into the stoma is quite soft and gets softer with his body heat. We are a bit scared as they suggest that we change the inner cannular daily (we already do this), but change the actual trachea every month. The rep said that it is like changing a earring! Very scared. I would like to take him in as an out patient to the hospital just to be safe!
             
            By the way the hospital that we normally take Matthew to is apparently going into liquidation.  Alistair will check this out with one of his friends who is a Doctor there.  A bit sad if this is so as we have developed a relationship with the people there and both my children were born there.
             
            Amanda - it is so great to hear about Jacob, it is testament again that these kids get stronger as they grow older.
             
            Not sure if we told you, but I did get my new (second hand) car. It is a Chrysler Voyager (Town and Country in the USA). It is a seven seater and the two middle chairs are removable. We take them out, wheel Matthew in, and away we go. It is so exciting. I made a goal in March that Matthew would be an active and mobile part of our lives, and this is really coming true. On Saturday we watched rugby in our lounge with our friends and Matthew was there. Not used to having a nurse there though, so in future I will ask them to bring something to do and they can sit in the bedroom while we interact with Matthew.
             
            Keep well all and stay strong.
             
            Janice, Al and Matthew


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          • ANN MILLER
            MessageHi Janice, Way to go Matthew! It s great he is taking fluids by the mouth. Take care, Darlene ... From: Wright, Janice
            Message 5 of 7 , Aug 2, 2004
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              Hi Janice,
               
              Way to go Matthew!  It's great he is taking fluids by the mouth. 
               
              Take care,
               
              Darlene
              ----- Original Message -----
              Sent: Monday, August 02, 2004 4:00 AM
              Subject: RE: [Myotubular_Myopathy] News

              Hi Connie,
              Thanks for the message. We got Matthew's previous trach at the end of December last year. It was the first time that he had an inner cannula.  We were changing his inner cannula every third day. However, when the cuff packed up there were a lot of secretions trapped and the smell was horrendous. We ended up changing the inner every day.  We then saw a new rep and she was horrified that we don't change the actual trach every month. It was on her suggestion that we put a new trach in. She wanted to do it at home and we said no-way! Thank goodness we took Matthew to hospital cos he absolutely crashed. He had an elevated heart rate the whole day as he was aware that we were going to take him to hospital for the procedure. We gave him Dormicam at the hospital, but he continued to stress. We had the Dr on standby and proceeded with trying to change the trach. The new trach was way too small and Matthew crashed. The vent defaulted (correctly so) to zero peep as it sensed that it was over ventilating him. It was pushing all the air into him and it was escaping past the trach. We then bagged him on the new trach and tried to phone the Dr, but guess what - you are not allowed to phone out from the hospital room and you have to have a pin number to use the phone. People were screaming up the corridor - call the Dr, call the Dr. It would have been funny if it was not so scary. They put the next size trach in, but it was also too small. Eventually they tried to get one from the OR or emergency room, but guess what - they didn't have paediatric trachs in stock - what a circus. Eventually the rep found a trach that was similar to the one he had previously, but without the cuff. Once we put this in, Matthew looked up at all of us and said, "Daarsy" which means "there you are!" Everyone packed up laughing. Matthew knows what he wants and when we put in the trach he was comfortable with - he let us know. What a trooper - to go from blue to chatting in 20 seconds.
               
              I had promised him that he was not going to stay at the hospital, and as soon as he stabilised, I took him home. The trach is a little too small, but he and the vent are coping. We plan to change it in a months time, and set up a protocol of changing it every month. He has had no side effects from the incident and is very chirpy and is in a fantastic mood. When I left this morning he was singing along to the Teletubbies and saying Big Hugs - so hopefully we did the right thing.
               
              From what I read on the Tracheostomy site, it is normal to change the trach every month. We are also setting up a protocol of changing the G Tube every month. It is very scary for us, and I am not looking forward to doing it the first time on our own,  but I was also terrified to suction Matthew the first time, and now I do it with my eyes closed!
               
              Matthew has been unusually well this winter (touch wood) so I am sure that changing the cannula daily and neb'ing him with Atrovent every day is the right thing.
               
              Also some excellent news for us is that Matthew has started to take liquid orally. His speech therapist went to a conference on managing kids with trachs, and has given us a whole set of exercises that we have to do for him and we have to try and desensitise his mouth. We are very excited that he is able to take about 5 mls and seems to enjoy it. He even holds the bottle himself. Its quite awesome to see after all this time, my kid with a bottle in his hand.
               
              Apart from the hospital and back, we haven't been out and about in the car again, but he is still out and about in his buggy.
               
              Keep well and hope everything continues to go well for you and Benjamin.
               
              Cheers Janice
               
               
              -----Original Message-----
              From: connie guinn [mailto:kookla_g@...]
              Sent: 01 August 2004 05:46
              To: Myotubular_Myopathy@yahoogroups.com
              Subject: Re: [Myotubular_Myopathy] News

              Janice,
              Hi!  It's good to hear from you again!  That is so great that you are able to make Matthew be a mobile part of the family, now- that must be so nice!!  We are still trying to get a vehicle that can transport Benjamin and his w/c and all the equipment, too. I can't wait to get to that point, too!!
               
              Prior to the new trach for Matthew, how often have you had to change his trach?  We change Benjamin's once a month, too.  It was a little intimidating, at first, but now it is old hat!
               
              That is sad about the hospital...  
               
              How is everyone doing?  We are all ok, here. 
              Take care,
              -Connie

              "Wright, Janice (J)" <janice.wright@...> wrote:
              Hi All,
               
              Got into work this morning and spend a good half hour reading all the messages. It is so great to hear all the news.  It is so inspirational to see what everyone is up to.  Actually I am quite jealous re the LTV. Alistair and I were quite keen to get one when we first moved Matthew home. It was too expensive because of the exchange rate and that the Medical Aid did not cover the cost of the vent.  The one we got works brilliantly though but weighs 14kg and it's internal battery only lasts about 45 minutes.  We actually had to design the Shona Buggy around the weight of the vent and car battery.
               
              Matthew doesn't have the desatting episodes but if he does desat, it is normally just a plug (even small ones can affect him). We saw our trachea rep last week and she wants to replace his trachea. The one we put in in December had the cuff fail, and they feel this is a breeding ground for infections. They want to put in a new one on Wednesday (at Home!!!). It does not move from side to side like his current one, but is apparently more comfortable to wear longer term. Apparently the tube that goes into the stoma is quite soft and gets softer with his body heat. We are a bit scared as they suggest that we change the inner cannular daily (we already do this), but change the actual trachea every month. The rep said that it is like changing a earring! Very scared. I would like to take him in as an out patient to the hospital just to be safe!
               
              By the way the hospital that we normally take Matthew to is apparently going into liquidation.  Alistair will check this out with one of his friends who is a Doctor there.  A bit sad if this is so as we have developed a relationship with the people there and both my children were born there.
               
              Amanda - it is so great to hear about Jacob, it is testament again that these kids get stronger as they grow older.
               
              Not sure if we told you, but I did get my new (second hand) car. It is a Chrysler Voyager (Town and Country in the USA). It is a seven seater and the two middle chairs are removable. We take them out, wheel Matthew in, and away we go. It is so exciting. I made a goal in March that Matthew would be an active and mobile part of our lives, and this is really coming true. On Saturday we watched rugby in our lounge with our friends and Matthew was there. Not used to having a nurse there though, so in future I will ask them to bring something to do and they can sit in the bedroom while we interact with Matthew.
               
              Keep well all and stay strong.
               
              Janice, Al and Matthew


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            • redscootee@webtv.net
              Janice, WTG Matthew on taking liquids. How great is that! Keep up the great job. take care pat
              Message 6 of 7 , Aug 3, 2004
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                Janice, WTG Matthew on taking liquids. How great is that! Keep up the
                great job.
                take care pat
              • connie guinn
                Janice, Wow- how scary that must have been! What an ordeal! Before, when you mentioned not wanting to change his trach at home, I didn t understand why.
                Message 7 of 7 , Aug 12, 2004
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                  Janice,
                  Wow- how scary that must have been!  What an ordeal!  Before, when you mentioned not wanting to change his trach at home, I didn't understand why.  But, now I do.  I'm sorry it was so 'eventful', but I am glad that Matthew recovered so well and quickly!  You're right, it will become 'old hat' for you to change the trach- especially since you are going to be doing it once a month.  In comparison, I must say that changing the G-button is a piece of cake!  We also change Benjamin's trach every month, but we only change his G-button every 3-6 months (for insurance reasons).  However, if it were up to us, we would change that out monthly, as well.  Those things get really nasty, really quickly!
                   
                  Congratulations on Matthew taking some fluid by mouth!    What a huge milestone!!
                  I'm glad that he gets to get out and about in his Buggy, too.  The only time Benjamin goes out and about in his wheelchair is when he has doctor appointments .  Unfortunately, it is just MUCH too hot and humid here for him to be able to tolerate it.  We only take him swimming at night (when it has cooled down to about 90 degrees Farenheit)- it is the only time he can tolerate it.  Otherwise, things have been going well here.  Benjamin continues to do well with being weaned off the ventilator.   He averages about 12 hours/ day being off of it!!
                  Take care,
                   
                  -Connie

                  "Wright, Janice (J)" <janice.wright@...> wrote:
                  Hi Connie,
                  Thanks for the message. We got Matthew's previous trach at the end of December last year. It was the first time that he had an inner cannula.  We were changing his inner cannula every third day. However, when the cuff packed up there were a lot of secretions trapped and the smell was horrendous. We ended up changing the inner every day.  We then saw a new rep and she was horrified that we don't change the actual trach every month. It was on her suggestion that we put a new trach in. She wanted to do it at home and we said no-way! Thank goodness we took Matthew to hospital cos he absolutely crashed. He had an elevated heart rate the whole day as he was aware that we were going to take him to hospital for the procedure. We gave him Dormicam at the hospital, but he continued to stress. We had the Dr on standby and proceeded with trying to change the trach. The new trach was way too small and Matthew crashed. The vent defaulted (correctly so) to zero peep as it sensed that it was over ventilating him. It was pushing all the air into him and it was escaping past the trach. We then bagged him on the new trach and tried to phone the Dr, but guess what - you are not allowed to phone out from the hospital room and you have to have a pin number to use the phone. People were screaming up the corridor - call the Dr, call the Dr. It would have been funny if it was not so scary. They put the next size trach in, but it was also too small. Eventually they tried to get one from the OR or emergency room, but guess what - they didn't have paediatric trachs in stock - what a circus. Eventually the rep found a trach that was similar to the one he had previously, but without the cuff. Once we put this in, Matthew looked up at all of us and said, "Daarsy" which means "there you are!" Everyone packed up laughing. Matthew knows what he wants and when we put in the trach he was comfortable with - he let us know. What a trooper - to go from blue to chatting in 20 seconds.
                   
                  I had promised him that he was not going to stay at the hospital, and as soon as he stabilised, I took him home. The trach is a little too small, but he and the vent are coping. We plan to change it in a months time, and set up a protocol of changing it every month. He has had no side effects from the incident and is very chirpy and is in a fantastic mood. When I left this morning he was singing along to the Teletubbies and saying Big Hugs - so hopefully we did the right thing.
                   
                  From what I read on the Tracheostomy site, it is normal to change the trach every month. We are also setting up a protocol of changing the G Tube every month. It is very scary for us, and I am not looking forward to doing it the first time on our own,  but I was also terrified to suction Matthew the first time, and now I do it with my eyes closed!
                   
                  Matthew has been unusually well this winter (touch wood) so I am sure that changing the cannula daily and neb'ing him with Atrovent every day is the right thing.
                   
                  Also some excellent news for us is that Matthew has started to take liquid orally. His speech therapist went to a conference on managing kids with trachs, and has given us a whole set of exercises that we have to do for him and we have to try and desensitise his mouth. We are very excited that he is able to take about 5 mls and seems to enjoy it. He even holds the bottle himself. Its quite awesome to see after all this time, my kid with a bottle in his hand.
                   
                  Apart from the hospital and back, we haven't been out and about in the car again, but he is still out and about in his buggy.
                   
                  Keep well and hope everything continues to go well for you and Benjamin.
                   
                  Cheers Janice
                   
                   
                  -----Original Message-----
                  From: connie guinn [mailto:kookla_g@...]
                  Sent: 01 August 2004 05:46
                  To: Myotubular_Myopathy@yahoogroups.com
                  Subject: Re: [Myotubular_Myopathy] News

                  Janice,
                  Hi!  It's good to hear from you again!  That is so great that you are able to make Matthew be a mobile part of the family, now- that must be so nice!!  We are still trying to get a vehicle that can transport Benjamin and his w/c and all the equipment, too. I can't wait to get to that point, too!!
                   
                  Prior to the new trach for Matthew, how often have you had to change his trach?  We change Benjamin's once a month, too.  It was a little intimidating, at first, but now it is old hat!
                   
                  That is sad about the hospital...  
                   
                  How is everyone doing?  We are all ok, here. 
                  Take care,
                  -Connie

                  "Wright, Janice (J)" <janice.wright@...> wrote:
                  Hi All,
                   
                  Got into work this morning and spend a good half hour reading all the messages. It is so great to hear all the news.  It is so inspirational to see what everyone is up to.  Actually I am quite jealous re the LTV. Alistair and I were quite keen to get one when we first moved Matthew home. It was too expensive because of the exchange rate and that the Medical Aid did not cover the cost of the vent.  The one we got works brilliantly though but weighs 14kg and it's internal battery only lasts about 45 minutes.  We actually had to design the Shona Buggy around the weight of the vent and car battery.
                   
                  Matthew doesn't have the desatting episodes but if he does desat, it is normally just a plug (even small ones can affect him). We saw our trachea rep last week and she wants to replace his trachea. The one we put in in December had the cuff fail, and they feel this is a breeding ground for infections. They want to put in a new one on Wednesday (at Home!!!). It does not move from side to side like his current one, but is apparently more comfortable to wear longer term. Apparently the tube that goes into the stoma is quite soft and gets softer with his body heat. We are a bit scared as they suggest that we change the inner cannular daily (we already do this), but change the actual trachea every month. The rep said that it is like changing a earring! Very scared. I would like to take him in as an out patient to the hospital just to be safe!
                   
                  By the way the hospital that we normally take Matthew to is apparently going into liquidation.  Alistair will check this out with one of his friends who is a Doctor there.  A bit sad if this is so as we have developed a relationship with the people there and both my children were born there.
                   
                  Amanda - it is so great to hear about Jacob, it is testament again that these kids get stronger as they grow older.
                   
                  Not sure if we told you, but I did get my new (second hand) car. It is a Chrysler Voyager (Town and Country in the USA). It is a seven seater and the two middle chairs are removable. We take them out, wheel Matthew in, and away we go. It is so exciting. I made a goal in March that Matthew would be an active and mobile part of our lives, and this is really coming true. On Saturday we watched rugby in our lounge with our friends and Matthew was there. Not used to having a nurse there though, so in future I will ask them to bring something to do and they can sit in the bedroom while we interact with Matthew.
                   
                  Keep well all and stay strong.
                   
                  Janice, Al and Matthew


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