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Kaylee

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  • alison.frase
    So sorry to hear Kaylee is back in the hospital. I will be lifting you all in prayer. Joshua has always had problems with vein access - very rarely did a
    Message 1 of 14 , Dec 10, 2006
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      So sorry to hear Kaylee is back in the hospital. I will be lifting you
      all in prayer. Joshua has always had problems with vein access - very
      rarely did a nurse ever get an IV in - I always pushed for an
      Anesthesiologist/doctor to do it. All the Best, Alison Frase
    • Abbie Howeth
      Just thought I would give everyone a quick update on Kaylee. She is still in the hospital and will be having surgery tomorrow for a trach placement. Which as
      Message 2 of 14 , Dec 19, 2006
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        Just thought I would give everyone a quick update on Kaylee. She is
        still in the hospital and will be having surgery tomorrow for a trach
        placement. Which as many of you already know is scary thing, but
        worst of all, she will be spending the holidays in the hospital. I
        know many of you have already been through this procedure with your
        children and I was just wondering what it has been like for those that
        have? The surgery itself, the post-op, the healing and coming home,
        taking care of the demands a trach requires? These are just a few of
        the things running through my mind at the moment, but after everything
        we have been through with Kaylee, this seems like the hardest one to
        accept and cope with. I know many say that it is better for them and
        that it really does make their care easier, but it still seems like
        the hardest decision ever. Any input would be helpful!
        Abbie
      • Johnson, Tom
        For our son Jeffrey, it meant that he could breath easier... it meant that he could come off the ventilator... It meant a lot of things including coming home
        Message 3 of 14 , Dec 19, 2006
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          For our son Jeffrey, it meant that he could breath easier... it meant that he could come off the ventilator... It meant a lot of things including coming home from the hospital. I believe that Jeffrey's life would have been a lot harder on him had he not been trached. He has been trached since about 1 1/2 months old. He is now 9 1/2. He uses a Passy-Muir valve so that he can talk.


          Jeffrey's Dad,

          Tom

          ________________________________

          From: Myotubular_Myopathy@yahoogroups.com on behalf of Abbie Howeth
          Sent: Tue 12/19/2006 8:06 PM
          To: Myotubular_Myopathy@yahoogroups.com
          Subject: [Myotubular_Myopathy] Kaylee



          Just thought I would give everyone a quick update on Kaylee. She is
          still in the hospital and will be having surgery tomorrow for a trach
          placement. Which as many of you already know is scary thing, but
          worst of all, she will be spending the holidays in the hospital. I
          know many of you have already been through this procedure with your
          children and I was just wondering what it has been like for those that
          have? The surgery itself, the post-op, the healing and coming home,
          taking care of the demands a trach requires? These are just a few of
          the things running through my mind at the moment, but after everything
          we have been through with Kaylee, this seems like the hardest one to
          accept and cope with. I know many say that it is better for them and
          that it really does make their care easier, but it still seems like
          the hardest decision ever. Any input would be helpful!
          Abbie
        • DARLENE MILLER
          Hi Abbie, Kaylee and your family are in our thoughts and prayers. A trach sounds scary, but it has become a normal thing around our house. Kyle and Connor
          Message 4 of 14 , Dec 20, 2006
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            Hi Abbie,
             
            Kaylee and your family are in our thoughts and prayers. 
            A trach sounds scary, but it has become a normal thing
            around our house.  Kyle and Connor both have trachs.
            Recently my dad was in an accident and had to get a
            trach. Once you become comfortable with the trach it
            will be less scary and you will not think about it as much.
             Kayla, their 6 year old sister, knows how to do trach care
            very well.  She has become an old pro at suctioning,
            keeping the trach clean, etc.  It is really cute to watch her
            tell the nurses at the hospital how to do trach care as they
            don't do it right .  She is not afraid to tell them it's not right
            too.  As far as the procedure, it doesn't take that long and
            our boys had no side effects.  Healing is like any other
            surgery, everyone is different.  You may want to check out
            the tracheostomy website, www.tracheostomy.com 
            It has some very good information as to what you should have
            on hand at home and when you travel.   Hope this helps.
             
            Take care,
            Darlene
             
             
             
            ----- Original Message -----
            Sent: Tuesday, December 19, 2006 9:06 PM
            Subject: [Myotubular_Myopathy] Kaylee

            Just thought I would give everyone a quick update on Kaylee. She is
            still in the hospital and will be having surgery tomorrow for a trach
            placement. Which as many of you already know is scary thing, but
            worst of all, she will be spending the holidays in the hospital. I
            know many of you have already been through this procedure with your
            children and I was just wondering what it has been like for those that
            have? The surgery itself, the post-op, the healing and coming home,
            taking care of the demands a trach requires? These are just a few of
            the things running through my mind at the moment, but after everything
            we have been through with Kaylee, this seems like the hardest one to
            accept and cope with. I know many say that it is better for them and
            that it really does make their care easier, but it still seems like
            the hardest decision ever. Any input would be helpful!
            Abbie

          • kristin cypher
            Hi Abbie: You, your family and Kaylee are all in our thoughts! Warmly, Kristin, Paul & Sebastian Abbie Howeth wrote: Just thought I
            Message 5 of 14 , Dec 20, 2006
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              Hi Abbie:
               
              You, your family and Kaylee are all in our thoughts!
               
              Warmly,
              Kristin, Paul & Sebastian

              Abbie Howeth <abbiesharrison@...> wrote:
              Just thought I would give everyone a quick update on Kaylee. She is
              still in the hospital and will be having surgery tomorrow for a trach
              placement. Which as many of you already know is scary thing, but
              worst of all, she will be spending the holidays in the hospital. I
              know many of you have already been through this procedure with your
              children and I was just wondering what it has been like for those that
              have? The surgery itself, the post-op, the healing and coming home,
              taking care of the demands a trach requires? These are just a few of
              the things running through my mind at the moment, but after everything
              we have been through with Kaylee, this seems like the hardest one to
              accept and cope with. I know many say that it is better for them and
              that it really does make their care easier, but it still seems like
              the hardest decision ever. Any input would be helpful!
              Abbie


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            • Amanda Hollingsworth
              Hi Abbie, No doubt that the decision to place a tracheostomy tube is a very difficult one. It was very hard for us, but I know that Jacob would be very, very
              Message 6 of 14 , Dec 20, 2006
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                Hi Abbie, No doubt that the decision to place a tracheostomy tube is a very difficult one. It was very hard for us, but I know that Jacob would be very, very sick or maybe not with us if he didn't have one. The surgery/recovery isn't too complicated. It is basically just making the incision and placing the tube. Of course there will be some bleeding unti it heels. I can't say anything that will make this any less scary, but please know that it does get easier. A trach seems very overwhelming and scary, and there are certainly risks involved, but seeing your child breathing with such relief is so worth it. Before Jacob got his trach (at 5 weeks old) we didn't know which breath would be the last before he would code. I can't count the times I walked into that NICU to see him intubated and back on the vent. And just thinking about what happened was so devastating.
                I'm sorry that your family has been treated so badly by the healtcare workers supposedly caring for Abbie. It is a tragedy that so many so-called professionals don't really have a clue. We've certainly had our share of doctors who wanted to write Jacob off simply because he has a neuromuscular disease. It is sad, but we just surround ourselves with doctors who DO CARE what happens to him - they treat Jacob, not MTM. His pulmonologist has been a true God-send. Without him, I'm not sure what we'd do.
                 
                Please know that you are all in our thoughts and prayers.
                 
                Love, Amanda Hollingsworth
                 

                Abbie Howeth <abbiesharrison@...> wrote:
                Just thought I would give everyone a quick update on Kaylee. She is
                still in the hospital and will be having surgery tomorrow for a trach
                placement. Which as many of you already know is scary thing, but
                worst of all, she will be spending the holidays in the hospital. I
                know many of you have already been through this procedure with your
                children and I was just wondering what it has been like for those that
                have? The surgery itself, the post-op, the healing and coming home,
                taking care of the demands a trach requires? These are just a few of
                the things running through my mind at the moment, but after everything
                we have been through with Kaylee, this seems like the hardest one to
                accept and cope with. I know many say that it is better for them and
                that it really does make their care easier, but it still seems like
                the hardest decision ever. Any input would be helpful!
                Abbie




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              • Scott & Betsy Grant
                Dear Abbie, My son Kyle had his trach placed when he was almost 3 years old. I was surprised to find that the whole thing was a lot easier than I anticipated.
                Message 7 of 14 , Dec 20, 2006
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                  Dear Abbie,
                  My son Kyle had his trach placed when he was almost 3 years old. I was surprised to find that the whole thing was a lot easier than I anticipated. He didn't' seem upset or scared, I think he came in and out of the OR very quickly, I don't remember him being particularly uncomfortable. I was nervous of course in bringing him home with this new thing to deal with, but in time we all adapted. Once I realized how I could suction him thoroughly and quickly without traumatizing his nose, and the respiratory support that we were giving him was working better for him, it eased things considerably. Remember too that at this time Kaylee must be seem to be pretty weak and frail, at least that's how it was with Kyle, but over time he regained his strength and went on to grow and gain even more. So now Kyle goes several hours per day with his trach capped off, with no vent support needed, and no suctioning either. To the amazement of his speech therapist, he  manages normal volume of his voice. So things can and do change dramatically with time!
                  All the best to you, love and prayers,
                  Betsy

                   
                  On 12/19/06, Abbie Howeth <abbiesharrison@...> wrote:

                  Just thought I would give everyone a quick update on Kaylee. She is
                  still in the hospital and will be having surgery tomorrow for a trach
                  placement. Which as many of you already know is scary thing, but
                  worst of all, she will be spending the holidays in the hospital. I
                  know many of you have already been through this procedure with your
                  children and I was just wondering what it has been like for those that
                  have? The surgery itself, the post-op, the healing and coming home,
                  taking care of the demands a trach requires? These are just a few of
                  the things running through my mind at the moment, but after everything
                  we have been through with Kaylee, this seems like the hardest one to
                  accept and cope with. I know many say that it is better for them and
                  that it really does make their care easier, but it still seems like
                  the hardest decision ever. Any input would be helpful!
                  Abbie


                • patsarah2006
                  Glad to hear Kaylee is doing well. Sarah
                  Message 8 of 14 , Dec 22, 2006
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                    Glad to hear Kaylee is doing well. Sarah
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