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5481Re: [Myotubular_Myopathy] Re: Introducing Myself

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    Jan 4, 2008
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      Hi Virginia,
      Yes, we have home nursing for both boys.  I suggest
      as Connie has mentioned to get all the nursing hours
      you can get.  Especially now.  With a two year old and
      a newborn with special needs you are going to have
      your hands full.  Been there done that!!!  Kyle's sister
      is one year older and it was really hard.  We started out
      with nursing but that only lasted for 2 months.  They
      said it was too far for them to come to our house.  We
      lived in the country and the nearest city was 40 miles
      away.  The nearest hospital was 32 miles away.  So I
      ended up taking care of him myself.  I wasn't able to go
      anywhere without taking him.  We had become
      inseperatable.  I was ok with it but it gets very stressful
      at times especially when the older child needs attention
      and/or is sick.   After two years we decided to move
      closer to the city.  We are now working on nurse #26.
      As Connie has mentioned, don't just take the first nurse
      you get unless you feel totally comfortable with her.  We
      have had nurses that had no idea what to do.  Then you
      can get the ones that want to do things their way and
      not yours.  Make sure they understand you are their boss
      and you want things done your way.  I've had them tell me
      well that's not how we did it at the nursing home.  Well,
      excuse me your in my house not the nursing home!  So
      things are done my way.  Or the one that wants to do
      everything by the book.  I wish someone would burn that
      book because it doesn't deal with our kids.  Then you will
      have the one that wants him to stay in bed all the time.
      We have had nurses not come back because Kyle doesn't
      stay in bed.  He gets on the floor, his chair, outside, eats
      with us at the table, his stander, his gait trainer, etc.  They
      say it is too much work for them having to move him from
      place to place.   Anyway,Kyle gets 9 hours a day and Connor
      gets 12 hours a day nursing.  Kyle's nurse goes to school
      with him.  Since he has the trach and feeding tube and
      sometimes uses the vent at school they require him to have
      a nurse or family member with him.  Connor gets more
      because they have another child that is younger and requires
      the attention Krystal can't give if she is the only one caring
      for the two of them.  Plus, Connor has a few more problems
      then Kyle does.  The nurse we have now is ok, she is just sooo
      slow at everything she does.  I have to keep telling her to move
      it,  that we need to go or we have to be somewhere at a certain
      time.   Especially, when we go to his therapies in the morning
      then I take them to school.  Not that I keep a time frame, but she
      has no since of time and that drives Kyle and me crazy.  He will
      actually leave her behind when he is in his power chair.  I think
      we keep her around for laughs, he will get really far ahead of her
      then turn around and wait for her to catch up to him, laughing the
      whole time (it is funny watching her run to catch him). 
      I'm not telling you this to scare you, but you do need to be aware
      of the different types there are out there and pick the ones that
      fit your family the best.   Also as Connie, has said check into
      Medicaid and check to see if he is eligible for SSI through Social
      Security if you haven't done so already.  She had some very good
      points.  You will need all the help you can get thru these
      departments.  Regular insurance will not pay for a lot of things
      the kids need or they will give you a hard time thinking you will give
      up trying.  You may want to contact the Muscular Dystrophy Office
      in your state to see what programs are available to you there if you
      haven't already done that. 
      Sorry this is so long, but I want you  to be prepared for what to
      expect before you have to go thru it.    Also before he comes
      home don't be afraid to ask for equipment they aren't sending
      home with him if you think he needs it.  They did that with Connor,
      then after we asked for it they said, oh, yes, he may need that.
      As I said before, don't be afraid to ask questions, no matter what
      I'm sure one of us if not all have been thru it already. 
      Take care,
      ----- Original Message -----
      Sent: Wednesday, January 02, 2008 10:59 PM
      Subject: [Myotubular_Myopathy] Re: Introducing Myself

      Hi Darlene,
      I'm glad to hear that both of your grandsons have been healthy lately.
      I was wondering if you have home nursing? We talked about it briefly
      at our care conference today and they recommend we have 16 hours of
      home nursing to start with. I'm not very exited about the idea of
      having people in my house that much but I also want Christopher to be
      safe and have good care. Do you have home nursing for your grandsons?
      If so how has that worked for your family?
      Thank you for sharing so much information with me.
      I really appreciate it.

      --- In Myotubular_Myopathy @yahoogroups. com, "DARLENE MILLER"
      <dm4462@...> wrote:
      > Hi Virginia,
      > Glad to hear Benjamin is doing fine. You will
      > definitely have your hands full with a 2 year old
      > and 3 month old.
      > Both boys have x-linked MTM but they are
      > different in many ways. Both boys are trached
      > and have g-tubes. Connor had 6 cardiac
      > arrests when he was between the age of
      > 4 months and 6 months. He is mostly vent
      > dependant. He does come off the vent about
      > 2 hours a day. Connor can't sit up and must
      > have someone near him at all times. Kyle on
      > the other hand, is very active. He attends
      > regular Kindergarten class. He is off the vent
      > during the day except when sick. Only uses
      > it at night. Kyle has operated a power chair
      > since he was 3 1/2 years old. He can also use a
      > manual chair as long as it is not on thick carpet.
      > He is very vocal with his speaking valve. Kyle
      > will try to do anything his older sister does. He
      > knows sign language and we are in the process
      > of getting him an augmentive communication
      > device. Both Connor and Kyle are doing great.
      > We have managed to keep them out of the
      > hospital now for Connor it has been a little over
      > a year and Kyle will be 2 years in March.
      > I'm glad you found this group. It has been a
      > great help to our family. Without it I don't know
      > what we would have done. The support is
      > unbelievable. If you have any questions, don't
      > hesitate to ask. One of us will be able to help or
      > at least put you in the right direction.
      > Take care,
      > Darlene
      > ----- Original Message -----
      > From: bv_mixednuts< mailto:bv_ mixednuts@ ...>
      > To:
      Myotubular_Myopathy @yahoogroups. com<mailto:Myotubular_Myopathy @yahoogroups. com>

      > Sent: Wednesday, January 02, 2008 7:05 PM
      > Subject: [Myotubular_ Myopathy] Re: Introducing Myself
      > --- In
      Myotubular_Myopathy @yahoogroups. com<mailto:Myotubular_Myopathy @yahoogroups. com>,
      > <dm4462@> wrote:
      > >
      > > Hi Virginia
      > >
      > > Welcome to the group. My name is Darlene. I have
      > > two grandsons with x-linked MTM. Kyle just turned
      > > 6 years old on the 15th and Connor is 2 years old.
      > > I'm Kyle's primary caregiver. This is a great place
      > > for information and support. Glad to hear
      > > Christopher is doing so well. Does Benjamin show
      > > any signs of MTM?
      > >
      > > Take care
      > > Darlene
      > >
      > > ----- Original Message -----
      > > From: bv_mixednuts< mailto:bv_ mixednuts@ >
      > > To:
      Myotubular_Myopathy @yahoogroups. com<mailto:Myotubular_Myopathy @yahoogroups. com><mailto:Myotubular_Myopathy @yahoogroups. com<mailto:Myotubular_Myopathy @yahoogroups. com>>
      > > Sent: Friday, December 28, 2007 4:02 PM
      > > Subject: [Myotubular_ Myopathy] Introducing Myself
      > >
      > >
      > > Hi i just wanted to introduce myself. I am Virginia and I have two
      > > sons. Benjamin is 2 and Christopher is 10 weeks. Christopher was
      > > diagnosed with myotubular myopathy a month ago through a muscle
      > > biopsy. We have genict tests outstanding to see if it is X
      Linked but
      > > the docs are pretty sure he has x-linked mtm. We are doing okay and
      > > hoping we will be able to bring him home in 4-6 weeks if we dont hit
      > > anymore bumps. So far he has been healthy other then a blood
      > infection.
      > > Christopher had surgery yesterday for a tracheotomy, g-tube, and a
      > > ladds procedure to fix an intestinal malrotation they discovered.
      > > Christopher went through surgery with no problems and is doing
      > > well. They put him on cpap just a few hours ago and he was doing
      > > when i left the hospital.
      > > Anyway we live just south of Seattle WA. Christopher was born at our
      > > local hospital and transfered to Swedish NICU for 3 weeks then
      to the
      > > PICU for 4weeks and he was moved to Children's hospital 3 weeks ago
      > > once we found out his diagnosis.
      > > So that's the basics, hope to get to know some of you.
      > > Virginia
      > >
      > Darlene,
      > Benjamin our older son does not show signs of MTM but we honestly
      > don't know what to look for. Benjamin is as far as we can see a
      > healthy 2 year old. He has hit all of his development milestones
      > early or on target so we pray he will not be affected by MTM
      > Do both of your grandsons have MTM with the same severity? Are they
      > ventilated, how are they doing?
      > Thank you,
      > Virginia

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