Loading ...
Sorry, an error occurred while loading the content.

Re: [Tracheostomy_infants] Digest Number 134

Expand Messages
  • Billy Nagey
    Hello, Mallory had a trach at 9 months for the same reason. There are lots of details. She is almost 2 and going to a daycare 3 days a week that cares for
    Message 1 of 6 , Jun 3, 2001
    • 0 Attachment
      Hello,  Mallory had a trach at 9 months for the same reason. There are lots of details.  She is almost 2 and going to a daycare 3 days a week that cares for her. Feel free to e-mail me at work or home.  I'd love to share experienes with you.  childdir@...   or ssb_bjgn@...
       
      Brenda
       
      ----- Original Message -----
      From: Tracheostomy_infants@yahoogroups.com
      Sent: Saturday, May 26, 2001 3:54 AM
      To: Tracheostomy_infants@yahoogroups.com
      Subject: [Tracheostomy_infants] Digest Number 134
       
      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
      ------------------------------------------------------------------------

      There is 1 message in this issue.

      Topics in this digest:

            1. Re: New "trach" mom
                 From: natrdr@...


      ________________________________________________________________________
      ________________________________________________________________________

      Message: 1
         Date: Fri, 25 May 2001 05:50:34 EDT
         From: natrdr@...
      Subject: Re: New "trach" mom


      In a message dated 5/24/01 9:34:46 AM, haileymyangel@... writes:

      >My daughter had a tracheostomy proformed almost 3
      >months ago. Things are going ok, I care for her all day and Hailey's
      >dad helps on days off and at night after work. She had to get a trach
      >due to her condition of tracheamalcia. I was wondering if there was
      >anyone with info on this condition or if their child had to get a
      >trach for the same reason. My daughter is 17 months old. Hope to hear
      >from someone soon. Thanks,
      >                       
      Hi, Christi
      Congratulations on surviving all this so far!  It's a lot to handle.  Is your
      daughter getting used to the trache yet?  Is it getting any easier for all of
      you yet??  Have her doctors said whether they expect her to need the trache
      for a long time, or just for a year or two?
      We have two kids with tracheomalacia and tracheostomies.  One came to us with
      her trache already in, and one got his trache a few months after he came to
      us.

      about tracheomalacia:
      "Any problem with the cartilage framework which normally supports the trachea
      will mean that the wall making up the airway is softer than it should be.  
      If there is a long section without strong enough cartilage, this can cause
      a ‘floppiness’ of the trachea, and this is called tracheomalacia."

      here are some sites that may help:
      http://www.vh.org/Providers/Textbooks/ElectricAirway/TableText/TableCharTLM.ht

      ml
      http://www.parentsplace.com/expert/pediatrician/general/qa/0%2C3459%2C1038%2C0

      0.html.cmd
      http://www.healthcentral.com/peds/top/001084.cfm

      take care,
      Margie     natrdr@...   
      Mom to:  Shelly (Nemaline Myopathy, ventilator dependent, tracheostomy,
      J-tube fed, wheelchair, etc.);  Lindsey (CP, seizures, tracheomalacia,
      tracheostomy,  wheelchair, communication device, etc.);  Justin (cleft
      lip/palate, seizures, ADHD, sensorimotor differences);  Jake (CP, central
      hypoventilation, ventilator dependent, tracheomalacia, tracheostomy, G-tube
      fed, wheelchair, etc.);  Molly (limb differences)....  (their cognitive
      levels are all over the scale....)  but now basically happy healthy kids who
      came to us through adoption & long-term-foster-placements.  (And,  yes, we
      have some nursing help, thank goodness.)


      ________________________________________________________________________
      ________________________________________________________________________



      Your use of Yahoo! Groups is subject to http://docs.yahoo.com/info/terms/


    • andrea warschun
      Hi all, I`m new to this list, my name is Andrea and I have a daughter, Sofìa, 4 1/2 years, who had her trach last month due to an acquired subglottic
      Message 2 of 6 , Jun 5, 2001
      • 0 Attachment
        Hi all, I`m new to this list, my name is Andrea and I
        have a daughter, Sof�a, 4 1/2 years, who had her trach
        last month due to an acquired subglottic stenosis.
        (because of the use of intubation in february when she
        had a severe neumonia that required the use of a
        ventilator). I take care of her all day, she accepted
        her trach very well and fortunately she is speaking
        quite good. I`m still gathering information and tips
        about the best handling of her trach, but I guess
        things are going quite well.
        regards to all, from Uruguay, South America
        Andrea


        -

        __________________________________________________
        Do You Yahoo!?
        Get personalized email addresses from Yahoo! Mail - only $35
        a year! http://personal.mail.yahoo.com/
      • natrdr@aol.com
        ... ssb_bjgn@msn.com How are you and Mallory doing? What kind of trache does she have? How mobile is she? Does she leave her trache tube alone, or does she
        Message 3 of 6 , Jun 18, 2001
        • 0 Attachment
          In a message dated 6/3/01 5:32:53 PM, ssb_bjgn@... writes:

          >Hello, Mallory had a trach at 9 months for the same reason. There are
          >lots of details. She is almost 2 and going to a daycare 3 days a week
          >that cares for her. Feel free to e-mail me at work or home. I'd love to
          >share experienes with you. childdir@... or
          ssb_bjgn@...


          How are you and Mallory doing?
          What kind of trache does she have? How mobile is she? Does she leave her
          trache tube alone, or does she pull it out? Was it hard to find a daycare
          who could and would care for her? Got any questions for me?
          Margie
        • haggymammy
          Hello all! My name is Karin, I live in Georgia and I am mommy to several children. My husband and I have 4 biological children and 22 adopted with special
          Message 4 of 6 , Apr 21 12:41 PM
          • 0 Attachment
            Hello all! My name is Karin, I live in Georgia and I am mommy to
            several children. My husband and I have 4 biological children and 22
            adopted with special needs. 3 of our bio kids have grown up and out
            and we have 4 living with our Heavenly Father. We have 18 at home
            now, 2 of them have trach's. One that has passed away had a trach as
            well. Drew is almost 2 1/2 and was trached the end of January 2002.
            He has hydranecephaly with hydrocephalus (means he has no brain at
            all and has hydro for which he is shunted). Drew also has a G-tube.
            He is a precious little boy! He uses a Shiley and a chain instead of
            the ties. The chain the hospital put on him rusted terribly within
            about 2 days, we recently got some from SCOOP and they have a much
            better clasp. Adam is 6 months and was trached at a few days old.
            He has HIE (Hypoxic Ischemic Encephalopathy)and also a G-tube. Adam
            uses a Bivona trach which I like MUCH better than the Shiley. Our
            son who passed away also used the Bivona but his was the Bivona Flex
            Trach. I have a problem with little Adam though, he arches really
            strongly, makes himself into a "C" and often flips over doing it.
            His trach gets blocked or actually pulled out sometimes when he does
            this. He also tangles up terribly in his feeding tube, apnea leads,
            pulse ox, etc. We stopped using the trach collar and mist, he is on
            an HME full time and does soooo much better. That leads me to a
            question, do you know why some places recommend cool mist and others
            heated? Drew is on heated.... I will be traveling with Drew this
            coming weekend to Texas for a week. It's going to be interesting to
            see how it goes bringing all his machinery... Looking forward to
            meeting everyone!

            Karin <Mommy to Kristina (22) who is mommy to 1 yr old Grace, Faith
            (19), Cody (19), Julia (15) Down syndrome, Brandon (13)Down syndrome,
            Celiac Disease, Nikki (13) Reactive Attachemnt Disorder, Ashley (9)
            Cornelia de Lange syndrome, nonverbal Gtube, Matthew (9) shaken baby
            syndrome, hydro/shunt, blind, cp, non-verbal, Jamie (8) Down
            syndrome, bi-polar, pseudotumor cerebri, Jon-Luke (8) blind/deaf,
            lives in Africa, Brianna (8) Cornelia de Lange syndrome, Gtube,
            nonverbal, nonambulatory, Sarah (7) spina bifida, Cecostomy tube, AJ
            (6) Down syndrome, dwarfism, Cookie (6) hydranencephaly without
            hydrocephalus, cp, blind, G&Jtubes, seizures, Christian (5) Autism,
            Devin (5) maximal hydrocephalus, Gtube, Cystic Fibrosis, Priya (4)
            Down syndrome, Ehlers-Danlos syndrome, BULLY! Jenya (3) Fetal
            Alcohol Syndrome, Craniosynostosis, ambiguous genitalia (maybe
            intersexed), Drew (2) total hydranencephaly with
            hydrocephalus/shunted, G-tube, trach, blind, cp, my heart and soul...
            Rose (1) Down syndrome, Lawson (10 months) Hydranencephaly with
            schizencephaly with hydrocephalus, shunted, g-tube, blind, cp, Adam
            (6 months)Hypoxic Ischemic Encephalopathy, trach, g-tube, cp,
            hypertension. Holly (free) Trisomy 13, Hannah (free) Herpes
            Encephalitis, Simon (free) Di George Sequence, Dandy Walker, Preemie
            grade IV bleed, Heart defects, lung disease, trach, shunt, g-tube.
          • engelter102800
            Karin- What do you mean by using a chain w/ the Shiley? Is that in place of ties? My son has a bivona trach tube. We have to change the velcro ties each
            Message 5 of 6 , Jun 6, 2002
            • 0 Attachment
              Karin-
              What do you mean by using a chain w/ the Shiley? Is that in place
              of ties? My son has a bivona trach tube. We have to change the
              velcro ties each morning, which is somewhat difficult. Is a chain
              easier? It sounds like it might be uncomfortable though.

              Sarah, mom to Jack (6 months) with a laryngeal cleft

              --- In Tracheostomy_infants@y..., "haggymammy" <aasknc@a...> wrote:
              > Hello all! My name is Karin, I live in Georgia and I am mommy to
              > several children. My husband and I have 4 biological children and
              22
              > adopted with special needs. 3 of our bio kids have grown up and
              out
              > and we have 4 living with our Heavenly Father. We have 18 at home
              > now, 2 of them have trach's. One that has passed away had a trach
              as
              > well. Drew is almost 2 1/2 and was trached the end of January
              2002.
              > He has hydranecephaly with hydrocephalus (means he has no brain at
              > all and has hydro for which he is shunted). Drew also has a G-
              tube.
              > He is a precious little boy! He uses a Shiley and a chain instead
              of
              > the ties. The chain the hospital put on him rusted terribly within
              > about 2 days, we recently got some from SCOOP and they have a much
              > better clasp. Adam is 6 months and was trached at a few days old.
              > He has HIE (Hypoxic Ischemic Encephalopathy)and also a G-tube.
              Adam
              > uses a Bivona trach which I like MUCH better than the Shiley. Our
              > son who passed away also used the Bivona but his was the Bivona
              Flex
              > Trach. I have a problem with little Adam though, he arches really
              > strongly, makes himself into a "C" and often flips over doing it.
              > His trach gets blocked or actually pulled out sometimes when he
              does
              > this. He also tangles up terribly in his feeding tube, apnea
              leads,
              > pulse ox, etc. We stopped using the trach collar and mist, he is
              on
              > an HME full time and does soooo much better. That leads me to a
              > question, do you know why some places recommend cool mist and
              others
              > heated? Drew is on heated.... I will be traveling with Drew this
              > coming weekend to Texas for a week. It's going to be interesting
              to
              > see how it goes bringing all his machinery... Looking forward to
              > meeting everyone!
              >
              > Karin <Mommy to Kristina (22) who is mommy to 1 yr old Grace, Faith
              > (19), Cody (19), Julia (15) Down syndrome, Brandon (13)Down
              syndrome,
              > Celiac Disease, Nikki (13) Reactive Attachemnt Disorder, Ashley (9)
              > Cornelia de Lange syndrome, nonverbal Gtube, Matthew (9) shaken
              baby
              > syndrome, hydro/shunt, blind, cp, non-verbal, Jamie (8) Down
              > syndrome, bi-polar, pseudotumor cerebri, Jon-Luke (8) blind/deaf,
              > lives in Africa, Brianna (8) Cornelia de Lange syndrome, Gtube,
              > nonverbal, nonambulatory, Sarah (7) spina bifida, Cecostomy tube,
              AJ
              > (6) Down syndrome, dwarfism, Cookie (6) hydranencephaly without
              > hydrocephalus, cp, blind, G&Jtubes, seizures, Christian (5) Autism,
              > Devin (5) maximal hydrocephalus, Gtube, Cystic Fibrosis, Priya (4)
              > Down syndrome, Ehlers-Danlos syndrome, BULLY! Jenya (3) Fetal
              > Alcohol Syndrome, Craniosynostosis, ambiguous genitalia (maybe
              > intersexed), Drew (2) total hydranencephaly with
              > hydrocephalus/shunted, G-tube, trach, blind, cp, my heart and
              soul...
              > Rose (1) Down syndrome, Lawson (10 months) Hydranencephaly with
              > schizencephaly with hydrocephalus, shunted, g-tube, blind, cp, Adam
              > (6 months)Hypoxic Ischemic Encephalopathy, trach, g-tube, cp,
              > hypertension. Holly (free) Trisomy 13, Hannah (free) Herpes
              > Encephalitis, Simon (free) Di George Sequence, Dandy Walker,
              Preemie
              > grade IV bleed, Heart defects, lung disease, trach, shunt, g-tube.
            • maryechick12@webtv.net
              yes more about the chains please...... http://community.webtv.net/maryechick12/WilliamPatrick http://community.webtv.net/maryechick12/pets
              Message 6 of 6 , Jun 6, 2002
              • 0 Attachment
              Your message has been successfully submitted and would be delivered to recipients shortly.