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Re: [Tracheostomy_infants] Another Newbie question

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  • Angie
    Margaret, just because you make too much money to be eligible for medicaid does not mean you wont qualify for a DSCC waiver program. Tell me what state you
    Message 1 of 8 , Dec 1, 2004
      Margaret, just because you make too much money to be eligible for medicaid does not mean you wont qualify for a DSCC waiver program.  Tell me what state you live in and I can help you find out about it.  In IL you qualify for 16 hours per day of nursing care and 336 hours of respite care per year.   Thanks, Angie
      ----- Original Message -----
      Sent: Sunday, November 28, 2004 9:40 PM
      Subject: [Tracheostomy_infants] Another Newbie question

      Here is Margaret K. Newbie again with the newest question of the day...

      It seems like everyone mentions coming home with nursing care --- at
      least part of the day --- in the beginning. So how do you *get* that????
      My baby had his trach put in on Tuesday (he'd been intubated for over 3
      weeks due to RSV pneumonia --- but being severely hypotonic to begin
      with, is now too weak to breathe on his own --- hence the trach for
      however long it takes him to regain his strength & be weaned off of the
      vent --- certainly till the spring & end of RSV season). They're talking
      about sending him home sometime in the next couple of weeks. My insurance
      doesn't cover home nursing care. We are not Medicaid eligible as a
      family. He does not have any official diagnosis of his disability,
      despite all of the tests ---- just severe muscle weakness (and congenital
      arthrogryposis, but nobody has actually written that down as an official
      diagnosis, since its fairly mild & they seem to consider it more a
      symptom than a condition). So we are going  to try to get him Medicaid
      based on his disability --- but how do you prove a disability if you have
      no diagnosis? Just saying that the baby is one year old & still can't
      hold up his head or roll over doesn't quite do it....

      Any suggestions how to do this? And can this be done without regards to
      family assets? My dh makes too much $ to be eligible for medicaid --- so
      we pay over $1000 mo for our insurance --- well --- we certainly don't
      have the money to pay for private nursing care!

      And if not --- how on earth do I go home with a baby with a trach ---
      possibly with a vent ---- he certainly can't be left alone ---- he can't
      let you know if he has a mucous plug or needs suctioning --- or even if
      he throws up --- if you're not looking --- you don't know a thing ---
      till the pulse/ox signals that he's desatted --- and he's turning
      blue....????

      So how can one person be a nurse 24/7...? I do need to sleep sometime...
      (I suppose eating & going to the bathroom are optional at this point...)
      My dh works 12+ hour days & helps with the other kids ---- I can't really
      expect him to stay up all night too. And I *do* have other kids that need
      my attention --- the one above the baby just turned 4yo --- and she needs
      a Mommy!

      So what do you all do????

      BTW, for anyone who was wondering --- we "solved" the room dillemna ----
      we're having the living room renovated this week ---- new windows &
      insulation & sheetrock & new wiring.... so this will become the baby's
      room --- it will just about hold the crib, the machinery, a shelf for
      supplies & a chair for the nurse (or me!) (And at this point I'm afraid
      to walk into the house at the end of the day... I'm afraid to look....
      and I'm keeping my 17yo home from school this week --- *somebody* has to
      be here with the workmen --- dh is at work & I'm in the PICU with the
      baby!)

      I've also been meaning to thank you all for your words of encouragement &
      advice, both on & off the list. Sorry I haven't had  the time to reply to
      the posts individually --- but I've saved them all & really appreciate
      them!

      Oh --- for whoever asked why the suctioning is a big deal ---- he'll be
      just fine --- then suddenly desats with no warning ---- sat & heart rate
      both plummeting to the 50's...... um... yeah --- that's traumatic all
      around, I'd say! Last week , just hours before the trach surgery --- he
      had to be extubated, resuscitated & emergency reintubated!  He's had
      thick secretions from the RSV & unable to cough ---- so that's why its
      been this way all along --- and that time --- well, the ET tube was
      plugged ---- they couldn't get anything with suction, couldn't bag him
      (nothing went in)... well... ah...... I'm supposed to deal with that at
      home????

      Oh --- I'm also curious --- all the folks who say that their kids don't
      mind being suctioned ---- my baby gets terribly upset & starts to cry
      when the nurse even reaches for the vent hose --- he already knows what's
      coming! (even though he'd been almost completely sedated for the last 4
      weeks --- he'd wake up from the heavy sedation when they had to suction!)
      So he gets all upset --- so he has more secretions... so he needs more
      suctioning... then he gets more upset.... then he has more
      secretions...... then guess what ---- ... right... more suctioning! Does
      anyone else have this??? (Mind you, I don't think its from anything they
      did wrong --- he's *always* hated having his nose and/or mouth cleaned
      under any circumstances --- so no big surprise here.)

      OK --- thanks again guys --- I'll be awaiting your answers with bated
      breath... (well, they don't have a pulse/ox on *me* --- and a good thing,
      I say!!! LOL!)

      Margaret


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    • aw82797
      Angie, I live in Florida can you tell me about this program because my nurses were telling me about respite care but when I asked my primary insurance about it
      Message 2 of 8 , Dec 2, 2004
        Angie,

        I live in Florida can you tell me about this program because my
        nurses were telling me about respite care but when I asked my primary
        insurance about it they said no I can't get it and they don't know of
        any insurance that covers it except maybe Hospice. My primary covers
        560 nursing hours a year and then I have Medicaid as a secondary
        insurance. I was just told yesterday that I have to return to work
        immediately or resigne and since our insurance is through my work I
        have to go back to work. We only get 8 hours per day nursing right
        now so It isn't possible for me to work full time. At 8 hours a day
        (I have it 7 days a week right now) 5 days a week I would use up my
        allowance from my Primary in 3 1/2 months.

        Thanks,

        Angela

        --- In Tracheostomy_infants@yahoogroups.com, "Angie" <pedsrn2@i...>
        wrote:
        > Margaret, just because you make too much money to be eligible for
        medicaid does not mean you wont qualify for a DSCC waiver program.
        Tell me what state you live in and I can help you find out about it.
        In IL you qualify for 16 hours per day of nursing care and 336 hours
        of respite care per year. Thanks, Angie
        > ----- Original Message -----
        > From: ttimes33@j...
        > To: TRACHTIES@L... ; Tracheostomy_infants@yahoogroups.com
        > Sent: Sunday, November 28, 2004 9:40 PM
        > Subject: [Tracheostomy_infants] Another Newbie question
        >
        >
        > Here is Margaret K. Newbie again with the newest question of the
        day...
        >
        > It seems like everyone mentions coming home with nursing care ---
        at
        > least part of the day --- in the beginning. So how do you *get*
        that????
        > My baby had his trach put in on Tuesday (he'd been intubated for
        over 3
        > weeks due to RSV pneumonia --- but being severely hypotonic to
        begin
        > with, is now too weak to breathe on his own --- hence the trach
        for
        > however long it takes him to regain his strength & be weaned off
        of the
        > vent --- certainly till the spring & end of RSV season). They're
        talking
        > about sending him home sometime in the next couple of weeks. My
        insurance
        > doesn't cover home nursing care. We are not Medicaid eligible as a
        > family. He does not have any official diagnosis of his disability,
        > despite all of the tests ---- just severe muscle weakness (and
        congenital
        > arthrogryposis, but nobody has actually written that down as an
        official
        > diagnosis, since its fairly mild & they seem to consider it more a
        > symptom than a condition). So we are going to try to get him
        Medicaid
        > based on his disability --- but how do you prove a disability if
        you have
        > no diagnosis? Just saying that the baby is one year old & still
        can't
        > hold up his head or roll over doesn't quite do it....
        >
        > Any suggestions how to do this? And can this be done without
        regards to
        > family assets? My dh makes too much $ to be eligible for
        medicaid --- so
        > we pay over $1000 mo for our insurance --- well --- we certainly
        don't
        > have the money to pay for private nursing care!
        >
        > And if not --- how on earth do I go home with a baby with a
        trach ---
        > possibly with a vent ---- he certainly can't be left alone ----
        he can't
        > let you know if he has a mucous plug or needs suctioning --- or
        even if
        > he throws up --- if you're not looking --- you don't know a
        thing ---
        > till the pulse/ox signals that he's desatted --- and he's turning
        > blue....????
        >
        > So how can one person be a nurse 24/7...? I do need to sleep
        sometime...
        > (I suppose eating & going to the bathroom are optional at this
        point...)
        > My dh works 12+ hour days & helps with the other kids ---- I
        can't really
        > expect him to stay up all night too. And I *do* have other kids
        that need
        > my attention --- the one above the baby just turned 4yo --- and
        she needs
        > a Mommy!
        >
        > So what do you all do????
        >
        > BTW, for anyone who was wondering --- we "solved" the room
        dillemna ----
        > we're having the living room renovated this week ---- new windows
        &
        > insulation & sheetrock & new wiring.... so this will become the
        baby's
        > room --- it will just about hold the crib, the machinery, a shelf
        for
        > supplies & a chair for the nurse (or me!) (And at this point I'm
        afraid
        > to walk into the house at the end of the day... I'm afraid to
        look....
        > and I'm keeping my 17yo home from school this week --- *somebody*
        has to
        > be here with the workmen --- dh is at work & I'm in the PICU with
        the
        > baby!)
        >
        > I've also been meaning to thank you all for your words of
        encouragement &
        > advice, both on & off the list. Sorry I haven't had the time to
        reply to
        > the posts individually --- but I've saved them all & really
        appreciate
        > them!
        >
        > Oh --- for whoever asked why the suctioning is a big deal ----
        he'll be
        > just fine --- then suddenly desats with no warning ---- sat &
        heart rate
        > both plummeting to the 50's...... um... yeah --- that's traumatic
        all
        > around, I'd say! Last week , just hours before the trach surgery -
        -- he
        > had to be extubated, resuscitated & emergency reintubated! He's
        had
        > thick secretions from the RSV & unable to cough ---- so that's
        why its
        > been this way all along --- and that time --- well, the ET tube
        was
        > plugged ---- they couldn't get anything with suction, couldn't
        bag him
        > (nothing went in)... well... ah...... I'm supposed to deal with
        that at
        > home????
        >
        > Oh --- I'm also curious --- all the folks who say that their kids
        don't
        > mind being suctioned ---- my baby gets terribly upset & starts to
        cry
        > when the nurse even reaches for the vent hose --- he already
        knows what's
        > coming! (even though he'd been almost completely sedated for the
        last 4
        > weeks --- he'd wake up from the heavy sedation when they had to
        suction!)
        > So he gets all upset --- so he has more secretions... so he needs
        more
        > suctioning... then he gets more upset.... then he has more
        > secretions...... then guess what ---- ... right... more
        suctioning! Does
        > anyone else have this??? (Mind you, I don't think its from
        anything they
        > did wrong --- he's *always* hated having his nose and/or mouth
        cleaned
        > under any circumstances --- so no big surprise here.)
        >
        > OK --- thanks again guys --- I'll be awaiting your answers with
        bated
        > breath... (well, they don't have a pulse/ox on *me* --- and a
        good thing,
        > I say!!! LOL!)
        >
        > Margaret
        >
        >
        > Community email addresses:
        > Post message: Tracheostomy_infants@onelist.com
        > Subscribe: Tracheostomy_infants-subscribe@onelist.com
        > Unsubscribe: Tracheostomy_infants-unsubscribe@onelist.com
        > List owner: Tracheostomy_infants-owner@onelist.com
        >
        > Shortcut URL to this page:
        > http://www.onelist.com/community/Tracheostomy_infants
        >
        >
        > Yahoo! Groups Sponsor
        > ADVERTISEMENT
        >
        >
        >
        >
        >
        > --------------------------------------------------------------------
        ----------
        > Yahoo! Groups Links
        >
        > a.. To visit your group on the web, go to:
        > http://groups.yahoo.com/group/Tracheostomy_infants/
        >
        > b.. To unsubscribe from this group, send an email to:
        > Tracheostomy_infants-unsubscribe@yahoogroups.com
        >
        > c.. Your use of Yahoo! Groups is subject to the Yahoo! Terms of
        Service.
      • Angie
        Unfortunately I don t know a whole lot about Florida, but most private insurance companies will not give respite care usually it comes from the Medicaid. Alot
        Message 3 of 8 , Dec 3, 2004
          Unfortunately I don't know a whole lot about Florida, but most private insurance companies will not give respite care usually it comes from the Medicaid.  Alot of times the nursing is ordered like 56 hours per week.  If so you can use extra hours when working and less on the weekends, it just depends on how the company words the authorization.  You also need to notify medicaid that you cannot work full-time if you only get 8 hours a day, therefore you will lose your insurance and need medicaid anyway.  Alot of insurances run out after a few weeks or months and that is when medicaid and start picking up.  If you have a DSCC (Division of Specialized Care for Children) office in Florida I suggest you call them.  They are a special section of medicaid and are usually listed separately in the phone book.  Another suggestion is to ask your nursing agencies what other options are in Florida, because they usually work with them all.  I hope this is of some help.  I will call my office in Florida on Monday and see If I can find out anything else.            Angie
          ----- Original Message -----
          From: aw82797
          Sent: Thursday, December 02, 2004 11:12 AM
          Subject: [Tracheostomy_infants] Re: Another Newbie question


          Angie,

             I live in Florida can you tell me about this program because my
          nurses were telling me about respite care but when I asked my primary
          insurance about it they said no I can't get it and they don't know of
          any insurance that covers it except maybe Hospice.  My primary covers
          560 nursing hours a year and then I have Medicaid as a secondary
          insurance.  I was just told yesterday that I have to return to work
          immediately or resigne and since our insurance is through my work I
          have to go back to work.  We only get 8 hours per day nursing right
          now so It isn't possible for me to work full time.  At 8 hours a day
          (I have it 7 days a week right now) 5 days a week I would use up my
          allowance from my Primary in 3 1/2 months. 

          Thanks,

          Angela

          --- In Tracheostomy_infants@yahoogroups.com, "Angie" <pedsrn2@i...>
          wrote:
          > Margaret, just because you make too much money to be eligible for
          medicaid does not mean you wont qualify for a DSCC waiver program. 
          Tell me what state you live in and I can help you find out about it. 
          In IL you qualify for 16 hours per day of nursing care and 336 hours
          of respite care per year.   Thanks, Angie
          >   ----- Original Message -----
          >   From: ttimes33@j...
          >   To: TRACHTIES@L... ; Tracheostomy_infants@yahoogroups.com
          >   Sent: Sunday, November 28, 2004 9:40 PM
          >   Subject: [Tracheostomy_infants] Another Newbie question
          >
          >
          >   Here is Margaret K. Newbie again with the newest question of the
          day...
          >
          >   It seems like everyone mentions coming home with nursing care ---
          at
          >   least part of the day --- in the beginning. So how do you *get*
          that????
          >   My baby had his trach put in on Tuesday (he'd been intubated for
          over 3
          >   weeks due to RSV pneumonia --- but being severely hypotonic to
          begin
          >   with, is now too weak to breathe on his own --- hence the trach
          for
          >   however long it takes him to regain his strength & be weaned off
          of the
          >   vent --- certainly till the spring & end of RSV season). They're
          talking
          >   about sending him home sometime in the next couple of weeks. My
          insurance
          >   doesn't cover home nursing care. We are not Medicaid eligible as a
          >   family. He does not have any official diagnosis of his disability,
          >   despite all of the tests ---- just severe muscle weakness (and
          congenital
          >   arthrogryposis, but nobody has actually written that down as an
          official
          >   diagnosis, since its fairly mild & they seem to consider it more a
          >   symptom than a condition). So we are going  to try to get him
          Medicaid
          >   based on his disability --- but how do you prove a disability if
          you have
          >   no diagnosis? Just saying that the baby is one year old & still
          can't
          >   hold up his head or roll over doesn't quite do it....
          >
          >   Any suggestions how to do this? And can this be done without
          regards to
          >   family assets? My dh makes too much $ to be eligible for
          medicaid --- so
          >   we pay over $1000 mo for our insurance --- well --- we certainly
          don't
          >   have the money to pay for private nursing care!
          >
          >   And if not --- how on earth do I go home with a baby with a
          trach ---
          >   possibly with a vent ---- he certainly can't be left alone ----
          he can't
          >   let you know if he has a mucous plug or needs suctioning --- or
          even if
          >   he throws up --- if you're not looking --- you don't know a
          thing ---
          >   till the pulse/ox signals that he's desatted --- and he's turning
          >   blue....????
          >
          >   So how can one person be a nurse 24/7...? I do need to sleep
          sometime...
          >   (I suppose eating & going to the bathroom are optional at this
          point...)
          >   My dh works 12+ hour days & helps with the other kids ---- I
          can't really
          >   expect him to stay up all night too. And I *do* have other kids
          that need
          >   my attention --- the one above the baby just turned 4yo --- and
          she needs
          >   a Mommy!
          >
          >   So what do you all do????
          >
          >   BTW, for anyone who was wondering --- we "solved" the room
          dillemna ----
          >   we're having the living room renovated this week ---- new windows
          &
          >   insulation & sheetrock & new wiring.... so this will become the
          baby's
          >   room --- it will just about hold the crib, the machinery, a shelf
          for
          >   supplies & a chair for the nurse (or me!) (And at this point I'm
          afraid
          >   to walk into the house at the end of the day... I'm afraid to
          look....
          >   and I'm keeping my 17yo home from school this week --- *somebody*
          has to
          >   be here with the workmen --- dh is at work & I'm in the PICU with
          the
          >   baby!)
          >
          >   I've also been meaning to thank you all for your words of
          encouragement &
          >   advice, both on & off the list. Sorry I haven't had  the time to
          reply to
          >   the posts individually --- but I've saved them all & really
          appreciate
          >   them!
          >
          >   Oh --- for whoever asked why the suctioning is a big deal ----
          he'll be
          >   just fine --- then suddenly desats with no warning ---- sat &
          heart rate
          >   both plummeting to the 50's...... um... yeah --- that's traumatic
          all
          >   around, I'd say! Last week , just hours before the trach surgery -
          -- he
          >   had to be extubated, resuscitated & emergency reintubated!  He's
          had
          >   thick secretions from the RSV & unable to cough ---- so that's
          why its
          >   been this way all along --- and that time --- well, the ET tube
          was
          >   plugged ---- they couldn't get anything with suction, couldn't
          bag him
          >   (nothing went in)... well... ah...... I'm supposed to deal with
          that at
          >   home????
          >
          >   Oh --- I'm also curious --- all the folks who say that their kids
          don't
          >   mind being suctioned ---- my baby gets terribly upset & starts to
          cry
          >   when the nurse even reaches for the vent hose --- he already
          knows what's
          >   coming! (even though he'd been almost completely sedated for the
          last 4
          >   weeks --- he'd wake up from the heavy sedation when they had to
          suction!)
          >   So he gets all upset --- so he has more secretions... so he needs
          more
          >   suctioning... then he gets more upset.... then he has more
          >   secretions...... then guess what ---- ... right... more
          suctioning! Does
          >   anyone else have this??? (Mind you, I don't think its from
          anything they
          >   did wrong --- he's *always* hated having his nose and/or mouth
          cleaned
          >   under any circumstances --- so no big surprise here.)
          >
          >   OK --- thanks again guys --- I'll be awaiting your answers with
          bated
          >   breath... (well, they don't have a pulse/ox on *me* --- and a
          good thing,
          >   I say!!! LOL!)
          >
          >   Margaret
          >
          >
          >   Community email addresses:
          >     Post message: Tracheostomy_infants@onelist.com
          >     Subscribe:    Tracheostomy_infants-subscribe@onelist.com
          >     Unsubscribe:  Tracheostomy_infants-unsubscribe@onelist.com
          >     List owner:   Tracheostomy_infants-owner@onelist.com
          >
          >   Shortcut URL to this page:
          >     http://www.onelist.com/community/Tracheostomy_infants
          >
          >
          >         Yahoo! Groups Sponsor
          >               ADVERTISEMENT
          >             
          >       
          >       
          >
          >
          > --------------------------------------------------------------------
          ----------
          >   Yahoo! Groups Links
          >
          >     a.. To visit your group on the web, go to:
          >     http://groups.yahoo.com/group/Tracheostomy_infants/
          >      
          >     b.. To unsubscribe from this group, send an email to:
          >     Tracheostomy_infants-unsubscribe@yahoogroups.com
          >      
          >     c.. Your use of Yahoo! Groups is subject to the Yahoo! Terms of
          Service.





          Community email addresses:
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            Subscribe:    Tracheostomy_infants-subscribe@onelist.com
            Unsubscribe:  Tracheostomy_infants-unsubscribe@onelist.com
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          Shortcut URL to this page:
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        • Raven Denicola
          hi my name is raven i have a 2 yr old son with a trach he has had his trach for a little over a year and a half there are always ways to make sure your
          Message 4 of 8 , Feb 3, 2005
            hi my name is raven i have a 2 yr old son with a trach he has had
            his trach for a little over a year and a half there are
            always "ways" to make sure your little one has the coverage with
            insurance and with nurses that he need any question feel free to
            email me privately
          Your message has been successfully submitted and would be delivered to recipients shortly.