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Trach Question

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  • Lauren Nese
    Hi everyone, I m new at this, so hopefully I m sending this correctly. My son, Matthew, a 25-week twin, currently 14 months old chronologically, has tracheal
    Message 1 of 3 , Jul 2, 2002
      Hi everyone,

      I'm new at this, so hopefully I'm sending this correctly. My son, Matthew,
      a 25-week twin, currently 14 months old chronologically, has tracheal
      malacia, bronchial malacia, BPD, and possibly reflux. He had a tracheotomy
      in August 2001 after 13 weeks on the ventilator (due to both ventilator
      dependence and airway issues). He weaned off of the ventilator within 24
      hours of his tracheotomy. He is now on CPAP at night, trach mask during the
      day, and is oxygen dependent (1/4 - 1 litre). His airway was initially
      improving (as shown by DL&Bs), but has gotten progressively worse since
      March. His ENT and pulmonary doctors are blaming this on hidden reflux (we
      don't see any reflux symptoms), but his GI doctors disagree. He is on
      Prilosec as a precaution and his feeds are thickened. He's had many reflux
      tests that all came back negative (cookie swallow, upper GI, and endoscopy).
      He is scheduled for a PH Probe next week. If it is positive, they are
      going to correct the reflux surgically with a Nissen fundoplication. If it
      is negative, they don't know what to do next. He is treated at a major
      Childrens' hospital, so I would think they would know what they are doing.
      At his last DL&B (every 3 weeks now), I was told that the airway was so
      small and so messed up with swelling and granulation tissue, that it is
      life-threatening - the smallest neonatal scope barely fits in his airway.
      Has anyone else had a similar problem and overcome it? Any ideas?

      Thanks,
      Lauren



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    • Deborah George
      Lauren Nese wrote: Hi everyone, I m new at this, so hopefully I m sending this correctly. My son, Matthew, a 25-week twin, currently 14
      Message 2 of 3 , Jul 5, 2002

          Lauren Nese <lnese@...> wrote:




        Hi everyone,

        I'm new at this, so hopefully I'm sending this correctly.  My son, Matthew,
        a 25-week twin, currently 14 months old chronologically, has tracheal
        malacia, bronchial malacia, BPD, and possibly reflux.  He had a tracheotomy
        in August 2001 after 13 weeks on the ventilator (due to both ventilator
        dependence and airway issues).  He weaned off of the ventilator within 24
        hours of his tracheotomy.  He is now on CPAP at night, trach mask during the
        day, and is oxygen dependent (1/4 - 1 litre).  His airway was initially
        improving (as shown by DL&Bs), but has gotten progressively worse since
        March.  His ENT and pulmonary doctors are blaming this on hidden reflux (we
        don't see any reflux symptoms), but his GI doctors disagree.  He is on
        Prilosec as a precaution and his feeds are thickened.  He's had many reflux
        tests that all came back negative (cookie swallow, upper GI, and endoscopy).
           He is scheduled for a PH Probe next week.  If it is positive, they are
        going to correct the reflux surgically with a Nissen fundoplication.  If it
        is negative, they don't know what to do next.  He is treated at a major
        Childrens' hospital, so I would think they would know what they are doing. 
        At his last DL&B (every 3 weeks now), I was told that the airway was so
        small and so messed up with swelling and granulation tissue, that it is
        life-threatening - the smallest neonatal scope barely fits in his airway. 
        Has anyone else had a similar problem and overcome it?  Any ideas?

        Thanks,
        Lauren



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      • SommerHN1@aol.com
        Lauren, Your son sounds alot like my son. Where are you located? We see some doctors in Cincinnati that are wonderful. Dr Robin Cotton (ENT) heads up a
        Message 3 of 3 , Jul 6, 2002
          Lauren,

          Your son sounds alot like my son. Where are you located? We see some
          doctors in Cincinnati that are wonderful. Dr Robin Cotton (ENT) heads up a
          team of doctors that all work together. We see a pulmo, GI and ENT. We do
          have to travel about 13 hours by car. We see Dr Cotton because my son needs
          airway surgery to correct his problems. I believe most of his problems came
          from reflux. Reflux definately worsens airway problems. Before going out to
          visit him, I talked with Dr Cotton on the phone. If you are able, I would
          think a consultation would be a great idea! Here is a website to look at:

          http://www.cincinnatichildrens.org/Services/Faculty_And_Staff/Department_Index

          .htm?GID=195

          The thing I really like is that the docs work well together and there is no
          questions on method of treatment by the time it gets to us. Our local docs
          (Omaha) often have differing opinions which is hard for a parent to sort out
          who is right. Let me know if I can be of more help. Also, I would be
          interested in the Ph probe results.

          Heather
          mom to Daniel 2. Born at 27 weeks. was BVCP now Left Vocal Cord Paralysis-->
          Trach and G-Tube 6/1/2000. Subglottic Stenosis, Posterier Glottic Stenosis,
          Tracheal Collapse, BPD, VP Shunt, Thal Fundo, reflux, Nissen Fundo
          (and Joseph 6, Eric 5)
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