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Matteo

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  • Donald Serafano
    Our son s name is Matteo.  He just came home for the first time yesterday after spending his first four months in hospitals.  He is up to 12 pounds and is
    Message 1 of 9 , Jun 27, 2008
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      Our son's name is Matteo.  He just came home for the first time yesterday after spending his first four months in hospitals.  He is up to 12 pounds and is batting at his hanging toys and kicking.  He is on the ventilator and feeds through a g-tube.
       
      Donald B. Serafano

    • Betsy Grant
      Sounds like he s doing pretty well! My son is 11 years old and is also doing great. He is just a regular kid, he likes school, hates homework, and enjoys life!
      Message 2 of 9 , Jun 27, 2008
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        Sounds like he's doing pretty well! My son is 11 years old and is also doing great. He is just a regular kid, he likes school, hates homework, and enjoys life!
        Betsy

        On Fri, Jun 27, 2008 at 2:30 PM, Donald Serafano <dbserafano@...> wrote:

        Our son's name is Matteo.  He just came home for the first time yesterday after spending his first four months in hospitals.  He is up to 12 pounds and is batting at his hanging toys and kicking.  He is on the ventilator and feeds through a g-tube.
         
        Donald B. Serafano


      • dbserafano
        Do any or many of our children with X-linked outgrow the need for a trach? ... also doing ... and enjoys ... time ... is up to 12 ... the
        Message 3 of 9 , Jun 28, 2008
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          Do any or many of our children with X-linked outgrow the need for a
          trach?

          --- In Myotubular_Myopathy@yahoogroups.com, "Betsy Grant" <betsy@...>
          wrote:
          >
          > Sounds like he's doing pretty well! My son is 11 years old and is
          also doing
          > great. He is just a regular kid, he likes school, hates homework,
          and enjoys
          > life!
          > Betsy
          >
          > On Fri, Jun 27, 2008 at 2:30 PM, Donald Serafano <dbserafano@...>
          > wrote:
          >
          > > Our son's name is Matteo. He just came home for the first
          time
          > > yesterday after spending his first four months in hospitals. He
          is up to 12
          > > pounds and is batting at his hanging toys and kicking. He is on
          the
          > > ventilator and feeds through a g-tube.
          > >
          > > Donald B. Serafano
          > >
          > >
          > >
          >
        • Betsy Grant
          I m not sure if any ever do. Each child is kind of writing their own story. I do know that there are some that do go without a trach, and seem to do alright,
          Message 4 of 9 , Jun 28, 2008
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            I'm not sure if any ever do. Each child is kind of writing their own story. I do know that there are some that do go without a trach, and seem to do alright, they use a system that uses a face mask, mouth or nose piece. Others do get a trach,  feeling as though they were up against a wall and had to. As parents got used to it, and see their child thrive, they are often glad they did.
            As you hinted, perhaps as a child gets older, maybe a bit stronger, and can do more for themselves, then maybe they'd do fine with a respiratory support system that doesn't need a trach. But as far as I know, if they have needed some type of support in childhood, they'll need some support later on as well.
            I don't know if you're aware yet, but there's research going on at Boston Children's that is very exciting and may lead to treatments in just a few years that would help our kids be stronger.
            Betsy

            On Sat, Jun 28, 2008 at 1:54 PM, dbserafano <dbserafano@...> wrote:

            Do any or many of our children with X-linked outgrow the need for a
            trach?

            --- In Myotubular_Myopathy@yahoogroups.com, "Betsy Grant" <betsy@...>
            wrote:


            >
            > Sounds like he's doing pretty well! My son is 11 years old and is
            also doing
            > great. He is just a regular kid, he likes school, hates homework,
            and enjoys
            > life!
            > Betsy
            >
            > On Fri, Jun 27, 2008 at 2:30 PM, Donald Serafano <dbserafano@...>

            > wrote:
            >
            > > Our son's name is Matteo. He just came home for the first
            time
            > > yesterday after spending his first four months in hospitals. He
            is up to 12
            > > pounds and is batting at his hanging toys and kicking. He is on
            the
            > > ventilator and feeds through a g-tube.
            > >
            > > Donald B. Serafano
            > >
            > >
            > >
            >


          • Shannon
            Donald, Javad was one of those children that didnot have a trach until he was older (3 1/2). I had really fought against getting a trach because I felt thst it
            Message 5 of 9 , Jun 29, 2008
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              Donald,

              Javad was one of those children that didnot have a trach until he was
              older (3 1/2). I had really fought against getting a trach because I
              felt thst it was giving in, dooming my beautiful boy to a ife of being
              on a ventilator. He had spent over one-half of his early years in the
              hospital and our life revolved around the people in the PICU.

              When Javad was 3 1/2 he coded in the PICU. I was already at work (I
              teach school), but my understanding is that it was pretty crazy and
              that it scared them. I knew the writing was on the wall. In some ways
              we were given no choice, it was hard...Although some say that he could
              grow out of the trach, I felt that we were making a lifetime decision...

              Overall, it has been the best for Javad. He grew 10 inches and gainee
              10 pounds that first year. He had been chronically underweight...He is
              healthier and has spent little time in the hospital.

              As Betsy said, there is a possibility that there are other options
              such as non-invasive ventilation. For us, it's not an option. I would
              rather let Javad be on the vent if he needs than have his face covered
              or limit his moility. This is a hot button topic for some, but I think
              you have to make the best choice for your child.

              This group is an incredible resource. I'd love to hear about your
              little man, Matteo. Where do you live? I also encourage you to look
              into the research at Boston Childrens Hospital. They are INCREDIBLE
              people!!

              Hope to talk with you soon!

              Shannon
            • Donald Serafano
              We just got confirmation today that Matteo has X linked Myotubual Myopathy.  Now his grandmother and aunt can get tested.  Don Serafano We just got
              Message 6 of 9 , Jul 14, 2008
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                We just got confirmation today that Matteo has X linked Myotubual Myopathy.  Now his grandmother and aunt can get tested.
                 
                Don Serafano

              • Melanie Smith
                your lucky, My son had the same thing, how ever no women in our family can be tested to see if they are carriers due the fact that the x that is effected is a
                Message 7 of 9 , Jul 14, 2008
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                  your lucky, My son had the same thing, how ever no women in our family can be tested 
                  to see if they are carriers due the fact that the x that is effected is a complete
                  deletion instead of just a mutation. I'm trying for another baby as it has been two years
                  since my son James died, Still so many test to pass before i can breath easy again.
                  Good luck with the testing
                  Melanie Smith
                  (Adelaide, South Australia)


                   



                  To: Myotubular_Myopathy@yahoogroups.com
                  From: dbserafano@...
                  Date: Mon, 14 Jul 2008 17:14:07 -0700
                  Subject: [Myotubular_Myopathy] Matteo

                  We just got confirmation today that Matteo has X linked Myotubual Myopathy.  Now his grandmother and aunt can get tested.
                   
                  Don Serafano


                • jenn332
                  ... yesterday after spending his first four months in hospitals.  He is up to 12 pounds and is batting at his hanging toys and kicking.  He is on the
                  Message 8 of 9 , Jul 15, 2008
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                    --- In Myotubular_Myopathy@yahoogroups.com, Donald Serafano
                    <dbserafano@...> wrote:
                    >
                    > Our son's name is Matteo.  He just came home for the first time
                    yesterday after spending his first four months in hospitals.  He is up
                    to 12 pounds and is batting at his hanging toys and kicking.  He is on
                    the ventilator and feeds through a g-tube.
                    >  Donald B. Serafano
                    >
                    Hi Donald,
                    Our son's name is Nathaniel and he was born at the end of March in the
                    UK. Like Matteo, he is ventilated and he feeds through an NG tube - a
                    gastrostomy tube is being fitted in the next few weeks. I guess we'll
                    be going through a lot of stages in our sons lives at roughly the same
                    time! Nathaniel's DNA was sent off in the middle of April so we are
                    hoping to have the confirmation soon so that I and my sister can get
                    tested. Nathaniel isn't home yet and I guess it will be another few
                    months before he is - there's so much more to get through before that.
                    Maybe we can share information if there's anything particularly
                    innovative that our consultants think of!

                    Jennie
                  • Donald Serafano
                    In Orange County, California, we have 16 hours per day of a Licensed Vocational Nursing (LVN).  The training is more than a Certified Nursing Assistant
                    Message 9 of 9 , Oct 29, 2008
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                      In Orange County, California, we have 16 hours per day of a Licensed Vocational Nursing (LVN).  The training is more than a Certified Nursing Assistant (CNA) but less than a Registered Nurse (RN).
                       
                      In general, the LVN's have very little experience with ventilators and are not supposed to change any settings.  But, they need to know what the alarms mean and how to reconnect and change the circuit.
                       
                      My wife has worked very hard creating the book of Matteo care.  This three ring binder contains instructions for how to do everything for Matteo.  It has greatly increased the consistency of his care from the nurses, relatives, and friends.  The nurses find time to read it when Matteo is sleeping and their assignments are current.
                       
                      The nursing does interfere somewhat with our relationships.  My favorite time is Sunday morning when it is just the three of us.  Other times, I have found that I just have to ask the nurses to take a break when I want some time alone with Matteo or I just take the lead with the bath when I am able to.  I also give the nurses an assignment taking care of some of Matteo's equipment such as the suction jar when I want some time alone with him. 
                       
                      I hope that each of us finds the balance that we want and need. 
                       
                       
                      Donald B. Serafano
                      (949) 929-6202

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