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Re: Introduction

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  • 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 1 of 6 , Jun 6, 2002
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      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 2 of 6 , Jun 6, 2002
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