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Re: [Tracheostomy_infants] New member

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  • Brenda Jagger
    Laurie, I am a grandmother to a 10 month old boy with a trach. I hear your frustration, concerns, and anger. Seth wears a heart monitor at night and if he
    Message 1 of 8 , Jul 2, 2001
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      Laurie,
      I am a grandmother to a 10 month old boy with a trach. I hear your
      frustration, concerns, and anger. Seth wears a heart monitor at night and
      if he gets a plug or whatever, the monitor goes off. Seth can't be heard
      except for the really HEAVY breathing that goes on when he is mad. I think
      in time you will be able to tell from another room if he is unhappy. Life
      goes on and somehow you will adjust. Right now, you just can't see that so
      don't look down the road. Take this one day and one situation at a time.
      Our 8 months with the trach has gone by so fast.

      You didn't say why he was trached. I am just curious.

      Brenda
      ----- Original Message -----
      From: Laurie <LLLORY@...>
      To: <Tracheostomy_infants@yahoogroups.com>
      Sent: Friday, June 29, 2001 8:27 PM
      Subject: [Tracheostomy_infants] New member


      > I just joined this list this moment. My baby boy was trached
      > yesterday. I'm so full of grief and anger. What will happen to him?
      > Will he be able to speak? How will I ever sleep, how will I know if
      > he is crying in the night? Will I be able to work outside the home?
      > I work 2 days a week. What is going to happen to my family? Can
      > someone please help me?
      > Laurie
      >
      >
      > 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
      >
      > Your use of Yahoo! Groups is subject to http://docs.yahoo.com/info/terms/
      >
      >
      >
    • LLLORY@yahoo.com
      Thanks all for responding. Travon is 5 months old. When he was born he had a very bad heart and went into kidney failure. As a result his lungs filled up
      Message 2 of 8 , Jul 2, 2001
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        Thanks all for responding. Travon is 5 months old.
        When he was born he had a very bad heart and went into
        kidney failure. As a result his lungs filled up with
        fluid and he had to be on a vent. His heart got
        stronger and his kidneys recovered, so after 3 weeks
        he was extubated. When he was 3 months old he started
        having some respiratory problems. He was diagnosed
        with bronchiolitis. A month later he was back in the
        hospital. During the hospitalization his retractions
        got worse and they diagnosed him with an upper airway
        obstruction. He was released because his sats were
        staying great, and he was to follow up with his
        pulmonologist. We set up a date for a bronchoscopy
        for about a month later, but Travon ended up in the
        hospital again before the time rolled around. His
        breathing was real bad. He was on heliox for a day,
        but whenever he would cry he just could not breathe.
        So they intubated him with the smallest et tube there
        is (2.5, preemie size). They wanted to do the bronch
        then, but he was too unstable. His lungs were
        collapsed and filled with fluid. After 2 days on the
        vent, he was taken to surgery for his trach. He was
        taken off the vent yesterday, and his chest x-rays are
        better. So that's our story in a nutshell. It breaks
        my heart that he can't cry or coo anymore. He was a
        real big *talker*
        I guess the plan is to wait 6 months to a year and see
        if the trachea grows enough for him to breathe
        normally. If not, I guess there will be some kind of
        surgical repair. That's about all I know.
        Thanks,
        Laurie

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      • Brenda Jagger
        Hi, I can see why this situation is so disheartening. You have heard him coo and make all those sweet baby noises. My daughter has adjusted well to her
        Message 3 of 8 , Jul 3, 2001
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          Hi,
          I can see why this situation is so disheartening. You have heard him coo and
          make all those sweet baby noises. My daughter has adjusted well to her
          situation. I've watched my grandson and the first time I had to suction him
          I thought I would pass out. I am more comfortable with all of this now,
          although not as okay with it as my daughter. Just remember you aren't
          alone. Hang in there.
          Brenda
          ----- Original Message -----
          From: <LLLORY@...>
          To: <Tracheostomy_infants@yahoogroups.com>
          Sent: Monday, July 02, 2001 12:36 PM
          Subject: Re: [Tracheostomy_infants] New member


          > Thanks all for responding. Travon is 5 months old.
          > When he was born he had a very bad heart and went into
          > kidney failure. As a result his lungs filled up with
          > fluid and he had to be on a vent. His heart got
          > stronger and his kidneys recovered, so after 3 weeks
          > he was extubated. When he was 3 months old he started
          > having some respiratory problems. He was diagnosed
          > with bronchiolitis. A month later he was back in the
          > hospital. During the hospitalization his retractions
          > got worse and they diagnosed him with an upper airway
          > obstruction. He was released because his sats were
          > staying great, and he was to follow up with his
          > pulmonologist. We set up a date for a bronchoscopy
          > for about a month later, but Travon ended up in the
          > hospital again before the time rolled around. His
          > breathing was real bad. He was on heliox for a day,
          > but whenever he would cry he just could not breathe.
          > So they intubated him with the smallest et tube there
          > is (2.5, preemie size). They wanted to do the bronch
          > then, but he was too unstable. His lungs were
          > collapsed and filled with fluid. After 2 days on the
          > vent, he was taken to surgery for his trach. He was
          > taken off the vent yesterday, and his chest x-rays are
          > better. So that's our story in a nutshell. It breaks
          > my heart that he can't cry or coo anymore. He was a
          > real big *talker*
          > I guess the plan is to wait 6 months to a year and see
          > if the trachea grows enough for him to breathe
          > normally. If not, I guess there will be some kind of
          > surgical repair. That's about all I know.
          > Thanks,
          > Laurie
          >
          > __________________________________________________
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          > Get personalized email addresses from Yahoo! Mail
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          >
          > 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
          >
          > Your use of Yahoo! Groups is subject to http://docs.yahoo.com/info/terms/
          >
          >
          >
        • Charlee Velazquez
          Laurie: Most probable you will hear Travon´s voice again, maybe soon. I didn´t hear from my daught for like 3 month, untill she started using the Passy Muir
          Message 4 of 8 , Jul 3, 2001
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            Laurie:
            Most probable you will hear Travon´s voice again, maybe soon. I didn´t hear
            from my daught for like 3 month, untill she started using the Passy Muir
            valve, which allows air to go in through the trach, but out through the
            mouth and nose. That first time I think I cried. Later on, she was able to
            to pretty much all the sounds she used to do before the trach.

            The PM valve, also reduced enormously the amount of secretions. Untill then,
            she had being using Thermovents. I don´t know about kids his age being able
            to use a PM valve, but I guess it isn´t a problem. You would have to call
            your doctor.

            You can find more about the PM valve at:

            http://www.passy-muir.com/

            Good luck and courage!

            Charlee (Dad to Valentina)


            ----- Original Message -----
            From: "Brenda Jagger" <jaggerrl@...>
            To: <Tracheostomy_infants@yahoogroups.com>
            Sent: Tuesday, July 03, 2001 2:03 PM
            Subject: Re: [Tracheostomy_infants] New member


            : Hi,
            : I can see why this situation is so disheartening. You have heard him coo
            and
            : make all those sweet baby noises. My daughter has adjusted well to her
            : situation. I've watched my grandson and the first time I had to suction
            him
            : I thought I would pass out. I am more comfortable with all of this now,
            : although not as okay with it as my daughter. Just remember you aren't
            : alone. Hang in there.
            : Brenda
            : ----- Original Message -----
            : From: <LLLORY@...>
            : To: <Tracheostomy_infants@yahoogroups.com>
            : Sent: Monday, July 02, 2001 12:36 PM
            : Subject: Re: [Tracheostomy_infants] New member
            :
            :
            : > Thanks all for responding. Travon is 5 months old.
            : > When he was born he had a very bad heart and went into
            : > kidney failure. As a result his lungs filled up with
            : > fluid and he had to be on a vent. His heart got
            : > stronger and his kidneys recovered, so after 3 weeks
            : > he was extubated. When he was 3 months old he started
            : > having some respiratory problems. He was diagnosed
            : > with bronchiolitis. A month later he was back in the
            : > hospital. During the hospitalization his retractions
            : > got worse and they diagnosed him with an upper airway
            : > obstruction. He was released because his sats were
            : > staying great, and he was to follow up with his
            : > pulmonologist. We set up a date for a bronchoscopy
            : > for about a month later, but Travon ended up in the
            : > hospital again before the time rolled around. His
            : > breathing was real bad. He was on heliox for a day,
            : > but whenever he would cry he just could not breathe.
            : > So they intubated him with the smallest et tube there
            : > is (2.5, preemie size). They wanted to do the bronch
            : > then, but he was too unstable. His lungs were
            : > collapsed and filled with fluid. After 2 days on the
            : > vent, he was taken to surgery for his trach. He was
            : > taken off the vent yesterday, and his chest x-rays are
            : > better. So that's our story in a nutshell. It breaks
            : > my heart that he can't cry or coo anymore. He was a
            : > real big *talker*
            : > I guess the plan is to wait 6 months to a year and see
            : > if the trachea grows enough for him to breathe
            : > normally. If not, I guess there will be some kind of
            : > surgical repair. That's about all I know.
            : > Thanks,
            : > Laurie
            : >
            : > __________________________________________________
            : > Do You Yahoo!?
            : > Get personalized email addresses from Yahoo! Mail
            : > http://personal.mail.yahoo.com/
            : >
            : > 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
            : >
            : > Your use of Yahoo! Groups is subject to
            http://docs.yahoo.com/info/terms/
            : >
            : >
            : >
            :
            :
            : 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
            :
            : Your use of Yahoo! Groups is subject to http://docs.yahoo.com/info/terms/
            :
            :
          • suzannemarie321@aol.com
            Hello everyone, My name is Suzanne and I am the Proud Mommy of Alexis. Alexis will be 4 on July 18th. 6 hours after birth Alexis was diagnosed with the most
            Message 5 of 8 , Jul 12, 2006
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              Hello everyone,
              My name is Suzanne and I am the Proud Mommy of Alexis. Alexis will be 4 on July 18th. 6
              hours after birth Alexis was diagnosed with the most severe case of Congenital Heart Defects called Hypoplastic Left Heart Syndrome. Only the Right side of her Heart had developed. Alexis was placed on the Transplant list and after 6 months and 4 days, we received our miracle, Her New Heart. After 5 unsuccessful attempts at extubating her, she went in to surgery for a Trach. She has now had her Trach since she was 7 months old. It seems like a roller coaster, with Pneumonia, Pseudomonas, Staph etc. I have the same issue with the sores under the Trach ties. She was decanulated once at the age of 1 1/2 in the Hospital, but coded instantly. We have had two sleep studies since which revealed Central Apnea. She does not tolerate being plugged and only tolerates the Passy Muir valve for a few minutes. I one day hope to hear her voice. She is talking around her Trach a little, and watching her mouth the words is really cute too! She knows over 100 words in sign language. I would have never been able to bring her home from the NICU after those 8 very long months without the Trach. So for that I am greatful. We are used to Lexie and her Trach, it is just a part of her now. I am looking forward to talking to others who have Trach babies as well. Glad to be here. Any other Heart mommy's on board???
               
              Suzanne~Proud Mommy of a Princess named Alexis, 3 (HLHS,Transplant 1-22-03) &
              her amazing Big Brother, Jordan, 12 (HH)~Redlands, CA.
              http://www.babyjellybeans.com/web/do/site?ID=2212
              Carepage~MYALEXIS







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