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Re: Anna

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  • terry zohar
    Hi my name is Anna and I have a 15 month old trachy girl. Just want to ask you how do you cope and deal with all this? Every week my daughter hate having her
    Message 1 of 9 , Aug 3, 2002
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      Hi my name is Anna and I have a 15 month old trachy girl. Just want to ask you how do you cope and deal with all this? Every week my daughter hate having her trachy change and she stress so much that her stoma almost closes, and that's why we have to change her trachy in the hospital..

      Please reply... Thank you

        Anna

        sammystreetuk@... wrote:

      Emma starting signing at 5 mths, her first sign was MORE! She had about 20 by the age of 1 year. She was completly silent, not even a gurgle until 18mths. Her first syllables came at 2yrs, she had a speech evaluation at 3 yrs and was said to be age appropriate! It is more important what goes in their ears than out of their mouths at this age, so talk,talk,talk! Emma is now 3yrs 4 mths,still trached, we came home from holiday yesterday, and the house was a mess of bags as dh brought them in, Emma said    " Eventually everywhere will be messy!"

      She still uses sign if stressed, we use MAKATON, which is the recognised children's sign language here in the UK and is very similar to BSL. Have fun with it, exagerate the signs. We have a MAKATON nursery rhyme video, which is brilliant.

      Best wishes,
      Sam


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    • sammystreetuk@aol.com
      Hi Anna, Welcome to the group. About tube changes, until our dd was old enough to understand and agree that we had to do it, we used to swaddle her up in a
      Message 2 of 9 , Aug 4, 2002
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        Hi Anna, Welcome to the group. About tube changes, until our dd was old enough to understand and agree that we had to do it, we used to swaddle her up in a large sheet. I can't remember how old she was when we stopped, it seems a long time ago she is 3 now. Now she sits on her Dad's lap or lies on the bed. She likes to take the tube out herself sometimes.The other local family in our area whose son had a trach used to change it whilst he was asleep. I wouldn't feel comfortable doing this, but it worked for them.HTH.
        About how you cope with  all this, all I can say is a day at a time. For us it has got easier with time. She hasn't been hospitalised for 8 months, and before that it was a year! But the first 2years, yuk! I'm really not sure how we got through them, but somehow you do. Keep your chin up!
        With love,
        Sam Mommy to Emma trached since 12wks due to a cavernous capillary hemangioma.In Rainy-England!
      • maryechick12@webtv.net
        Hello and welcome to the list.....My son goes to the ent clinic to get his trach changed as well but thats because I am a big CHICKEN he only gets his changed
        Message 3 of 9 , Aug 4, 2002
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          Hello and welcome to the list.....My son goes to the ent clinic to get
          his trach changed as well but thats because I am a big CHICKEN he only
          gets his changed once a month and he thinks it is the funniest thing
          (besides when he pulls the g-tube and puts his fingers in the hole) so
          it is not a big deal ..I don't under stand why so many have to have them
          changed once a week.? Is Billy different because he isn't a true
          respitory kid?
          Mary

          http://community.webtv.net/maryechick12/WilliamPatrick
          http://community.webtv.net/maryechick12/pets
        • sammystreetuk@aol.com
          We change Emma s tube once a week or more often because the secretions slowly coat the inside of the tube making the hole she breathes through smaller and
          Message 4 of 9 , Aug 5, 2002
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            We change Emma's tube once a week or more often because the secretions slowly coat the inside of the tube making the hole she breathes through smaller and smaller. It doesn't matter how much saline or humidity we use this just happens. Also Emma's trachea is very distended and misshapen so the tube becomes very bent.

            I used to shake all day before we did the tube change, we weren't given the option to take her to the hospital to have it changed, we had to be able to do it compitently before we were allowed to bring her home. Three yr=ears down the line I only now feel confident to do it on my onw though!!

            HTH, Sam
          • maryechick12@webtv.net
            I had tp be able to comfortably change Billys trach before he came home to ...but I got lucky he slept threw it all the time...So I still change it my self
            Message 5 of 9 , Aug 7, 2002
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              I had tp be able to comfortably change Billys trach before he came home
              to ...but I got lucky he slept threw it all the time...So I still change
              it my self just at the hospital ..latly I have been making his nurses
              come do it so I know the are comfortable with it to I think they want
              him there because he is a heart baby before anything else......sometimes
              I have to question waiting so long inbetween changes but every time I
              have asked to have it changed early(after beig sick ) they have
              agreed...thats the only time I have ever seen any build up n there to
              do you guys reuse the trach??? Mary

              http://community.webtv.net/maryechick12/WilliamPatrick
              http://community.webtv.net/maryechick12/pets
            • terry zohar
              Hi no I do not reuse my trachy tube. i use a new one evrytime. do you get scared of changing your baby s trachy? maryechick12@webtv.net wrote:I had tp be able
              Message 6 of 9 , Aug 9, 2002
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                Hi no I do not reuse my trachy tube. i use a new one evrytime. do you get scared of changing your baby's trachy?

                 maryechick12@... wrote:

                I had tp be able to comfortably change Billys trach before he came home
                to ...but I got lucky he slept threw it all the time...So I still change
                it my self just at the hospital ..latly I have been making his nurses
                come do it so I know the are comfortable with it to I think they want
                him there because he is a heart baby before anything else......sometimes
                I have to question waiting so long inbetween changes but every time I
                have asked to have it changed early(after beig sick ) they have
                agreed...thats the only time I have ever seen any build up n there to
                do you guys reuse the trach??? Mary

                http://community.webtv.net/maryechick12/WilliamPatrick
                http://community.webtv.net/maryechick12/pets



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