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Re: [Tracheostomy_infants] Hi from a new member

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  • Khourtniey Schulist
    Id love to hear your daughters story. I have two kids. A 29 weeker born with no problems and a 27 weeker with a whole slew of them (see my signature for a lot
    Message 1 of 7 , Nov 1, 2006
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      Id love to hear your daughters story. I have two kids. A 29 weeker born with no problems and a 27 weeker with a whole slew of them (see my signature for a lot of them) He did not get his trach until he was a year old and put on the vent a few weeks after getting the trach. He is 17 months old now and coming home from the hospital (again) today. He spends a lot of time in the hospital and just got out from a 4.5 month stay on the 17th of October!

      On 10/31/06, bleachmom <bleachmom@...> wrote:

      Hi I joined this group a while ago, I've been reading but haven't had
      time to post. Anyway my name is Amanda and I am Mom to three daughters
      ages, 30 months, 18 months and 4 months. My four month old Kathleen
      was born with a lot of complications (I'll spare you the story unless
      you want to hear it) and got a trach in August. She's been home from
      the hospital for over a month now and is doing pretty well. She has a
      mic key button and has to wear a humidified collar.....
      I do most of her care myself, my parents are living with us and help a
      lot with my other daughters and house cleaning so I can be free to
      care for Katie. My husband works like 60 hours a week and the only
      nursing care we get is a visiting nurse once a week. I can't say that
      I really want them to come more than that anyway because all she does
      is weight and blood pressure and that sort of thing and I'm a private
      person anyway so it's better that I don't have outside help.
      Anyway, thought I'd introduce myself.




      --
      Khourtniey

      http://cschulist.avonrepresentative.com/

      Mum of two Miracles:
      Kaia - 29 weeker
      25th July 2004
      (prior GERD (meds) - undiagnosed sleep apnea - mrsa - retractile testes)

      Aloshua - 27 weeker
      18th May 2005
      (spina bifida (surgical closure, confined t12, l1) - arnold chiari malformation type II - right ventricular hypertrophic cardiomyopathy (resolving) - hydrocephalus (shunted, 2 revisions and 1 EVD) - pda (closed) - inguinal bilateral hernias (repaired) - bilateral hydroceles (residual) - mal-rotation (ladd) - transitional ileus - failure to thrive (feeding button, 30cals/oz) - anemic (transfusions, iron) - GERD (nissen and meds) - overactive bladder - vesicoureteral reflux 2nd degree (resolving) - right eye iris coloboma/correctopia - amblyopia (patching) - bronchopulmonary dyplasia - subglottic stenosis (trach) - tracheal/bronchial/laryngeal malacia (vented) - MRSA and MRSE - left hip dysplasia - umbillical hernia - apnea (resolved) - bradycardic)
    • bleachmom
      Here s my story. I found out about five months into pregnancy that Kathleen had an omphalocele (intestines growing on the outside of her body) We expected I
      Message 2 of 7 , Nov 4, 2006
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        Here's my story.
        I found out about five months into pregnancy that Kathleen had an
        omphalocele (intestines growing on the outside of her body) We
        expected I would have a c-section and that baby would have surgery
        and a short stay in the NICU. She was born at 36 weeks and did great
        with the surgery. During her stay in the NICU it was discovered that
        she had Pierre Robin sequence. She then developed difficulty
        breathing and it was discovered that she had aspirated some food into
        her lungs and she had pnemonia, the doctors had to intubate her and
        when they did they found that she had a very small airway. After she
        recovered from the pnemonia she had surgery for a g-tube due to
        difficulty feeding because of her cleft palate. The respirater was
        still in. Soon after that we were sent to an ENT in Boston who could
        look at her airway (she was in Bangor Maine near where we live) He
        found that she had developed granulation in her throat and that the
        airway was almost completely closed up, he removed the respirator and
        gave her a trach. We were sent back to the hospital in Maine for
        recovery and dicharge but Kathleen developed a blood infection and
        had to stay for almost three more weeks to recieve intravenous
        antibiotics. Thirteen weeks after birth we finaly brought her home.
        We're looking to have cleft palate repaired at around 11 months old
        and the trach will come out as soon as she grows enough to open her
        airway back up, they expect she'll be around two. The g-tube
        hopefully will be out soon to as she is learning to take more and
        more food by mouth. I guess that's about all there is to tell for now.
      • Khourtniey Schulist
        Oh/..My trach son was a 27 weeker and spent over 3 months in the NICU.. but didnt really have many preemie complications.. He came home eating from a bottle
        Message 3 of 7 , Nov 4, 2006
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          Oh/..My trach son was a 27 weeker and spent over 3 months in the NICU.. but didnt really have many preemie complications.. He came home eating from a bottle just fine but got a button at 6 months old because he wasnt gaining weight and they he was burning too many calories eating.. Turns out it was his breathing causing the weight problems so at 12 months old he got his trach and was put on a vent because the trach alone didnt help the problems.. Your little girl has been through a lot.

          On 11/4/06, bleachmom <bleachmom@...> wrote:

          Here's my story.
          I found out about five months into pregnancy that Kathleen had an
          omphalocele (intestines growing on the outside of her body) We
          expected I would have a c-section and that baby would have surgery
          and a short stay in the NICU. She was born at 36 weeks and did great
          with the surgery. During her stay in the NICU it was discovered that
          she had Pierre Robin sequence. She then developed difficulty
          breathing and it was discovered that she had aspirated some food into
          her lungs and she had pnemonia, the doctors had to intubate her and
          when they did they found that she had a very small airway. After she
          recovered from the pnemonia she had surgery for a g-tube due to
          difficulty feeding because of her cleft palate. The respirater was
          still in. Soon after that we were sent to an ENT in Boston who could
          look at her airway (she was in Bangor Maine near where we live) He
          found that she had developed granulation in her throat and that the
          airway was almost completely closed up, he removed the respirator and
          gave her a trach. We were sent back to the hospital in Maine for
          recovery and dicharge but Kathleen developed a blood infection and
          had to stay for almost three more weeks to recieve intravenous
          antibiotics. Thirteen weeks after birth we finaly brought her home.
          We're looking to have cleft palate repaired at around 11 months old
          and the trach will come out as soon as she grows enough to open her
          airway back up, they expect she'll be around two. The g-tube
          hopefully will be out soon to as she is learning to take more and
          more food by mouth. I guess that's about all there is to tell for now.




          --
          Khourtniey

          http://cschulist.avonrepresentative.com/

          Mum of two Miracles:
          Kaia - 29 weeker
          25th July 2004
          (prior GERD (meds) - undiagnosed sleep apnea - mrsa - retractile testes - phimosis)

          Aloshua - 27 weeker
          18th May 2005
          (spina bifida (surgical closure, confined t12, l1) - arnold chiari malformation type II - right ventricular hypertrophic cardiomyopathy (resolving) - hydrocephalus (shunted, 2 revisions and 1 EVD) - pda (closed) - inguinal bilateral hernias (repaired) - bilateral hydroceles (residual) - mal-rotation (ladd) - transitional ileus - failure to thrive (feeding button, 30cals/oz) - anemic (transfusions, iron) - GERD (nissen and meds) - overactive bladder - vesicoureteral reflux 2nd degree (resolving) - right eye iris coloboma/correctopia - amblyopia (patching) - bronchopulmonary dyplasia - subglottic stenosis (trach) - tracheal/bronchial/laryngeal malacia (vented) - MRSA and MRSE - left hip dysplasia - umbillical hernia - apnea (resolved) - bradycardic)
        • bleachmom
          That had to be difficult to have a twelve month old get a trach, may I ask what is a vent?
          Message 4 of 7 , Nov 5, 2006
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            That had to be difficult to have a twelve month old get a trach, may I
            ask what is a vent?
          • ttimes33@juno.com
            My son also got trached the week after his first birthday --- he d been severely hypotonic (floppy) since birth but not sick prior to that & then at 11mos got
            Message 5 of 7 , Nov 5, 2006
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              My son also got trached the week after his first birthday --- he'd been
              severely hypotonic (floppy) since birth but not sick prior to that & then
              at 11mos got RSV pneumonia -- since his muscles were so weak, he couldn't
              cough & clear his lungs properly, stopped breathing, had to be intubated
              & put on a vent (ventilator -- aka respirator) --- was subsequently
              unable to be successfully extubated, so after a few weeks of that they
              had to trach him so we could wean him down off the vent gradually (when
              intubated its either in or out -- you can't take it out for awhile --
              with a trach, you can "pop on" & "pop off" the vent as needed). Now he's
              off the vent most of the day, still needs it overnight & when he has a
              cold (and sometimes when he just "conks out").

              Margaret, mommy to Hiz Royal Floppiness, turning 3 next week, severe
              hypotonia, severe scoliosis, trach, vent, g-tube, dvd player ;-)




              On Sun, 05 Nov 2006 16:24:19 -0000 "bleachmom" <bleachmom@...>
              writes:
              > That had to be difficult to have a twelve month old get a trach, may
              > I
              > ask what is a vent?
            • Khourtniey Schulist
              He was only 11# at a year old.. Teeny tiny little guy.. He in a sense was a newborn.. He did not do anything on his developmental level.. He still doesnt. He
              Message 6 of 7 , Nov 5, 2006
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                He was only 11# at a year old.. Teeny tiny little guy.. He in a sense was a newborn.. He did not do anything on his developmental level.. He still doesnt. He is 17 months old now and at a 5-9 months level. When he was 12 months old he was at a 0-3 month level.. I just think its hard to have any baby get a trach.. The vent is just a ventilator (respirator) that breathes for him. He can breathe on his own, but his airway is really floppy and collapses aroundd the trach and makes it very hard for him to breathe.. The vent just blows air into his lungs and helps keep his airway open to make it easier to breathe.. If you search youtube.com for 29and27weeker you can see videos of him

                On 11/5/06, bleachmom <bleachmom@...> wrote:

                That had to be difficult to have a twelve month old get a trach, may I
                ask what is a vent?




                --
                Khourtniey

                http://cschulist.avonrepresentative.com/

                Mum of two Miracles:
                Kaia - 29 weeker
                25th July 2004
                (prior GERD (meds) - undiagnosed sleep apnea - mrsa - retractile testes - phimosis)

                Aloshua - 27 weeker
                18th May 2005
                (spina bifida (surgical closure, confined t12, l1) - arnold chiari malformation type II - right ventricular hypertrophic cardiomyopathy (resolving) - hydrocephalus (shunted, 2 revisions and 1 EVD) - pda (closed) - inguinal bilateral hernias (repaired) - bilateral hydroceles (residual) - mal-rotation (ladd) - transitional ileus - failure to thrive (feeding button, 30cals/oz) - anemic (transfusions, iron) - GERD (nissen and meds) - overactive bladder - vesicoureteral reflux 2nd degree (resolving) - right eye iris coloboma/correctopia - amblyopia (patching) - bronchopulmonary dyplasia - subglottic stenosis (trach) - tracheal/bronchial/laryngeal malacia (vented) - MRSA and MRSE - left hip dysplasia - umbillical hernia - apnea (resolved) - bradycardic)
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