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3803Re: [Myotubular_Myopathy] Update

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  • Amanda Hollingsworth
    Dec 10, 2006
      Hi Ryan and Abbie,
       
      I'm sorry to hear that Kaylee is back in the hospital. We will be praying for a speedy recovery.
       
      Earlier this year, Jacob was very sick and required intravenous antibiotics for 30 days. We had discussed a venous access port prior to that because of the poor quality of Jacob's veins. He had the surgery for the port, and we were able to administer the antibiotics at home. Actually, before we decided on the port, they tried to put in a PICC line with no success. Fortunately, we haven't had to use the port since, but it was inevitable for Jacob to get one. It does have to be accessed and flushed once a month. My husband and I decided not to be the ones to do this. Instead, his pulmonary nurse does it.
       
      I hope this information is helpful to you.
       
      Take care,
      Amanda

      Abbie harrison <abbiesharrison@...> wrote:
      Darlene,
       I will definitely be praying fo ryour father.  Hopefully he will recover soon and be back to his old self.
      On other news, Kaylee is back in the hospital with a full blown case of pneumonia this time.  She is intubated and slightly sedated, but at least she is feeling better and able to relax for a few days without having to struggle to breath.  Some of the doctors are still pushing for the trach, but others seem to believe in the possibility of weening her down off the vent and back to her old self.  Also due to Kaylees poor veins, we have decided to have them put in a venous access port for easier IV access.  Do any of the other children have this?  Because I know Kaylees veins arent worth anything.
      We will keep you all updated and hope that everyone else is well during this season.
      Ryan and Abbie

      Darlene <dm4462@...> wrote:
      Hi All,

      It's been awhle since i really posted. Things have been
      crazy around here. My Dad was in an auto accident and is
      still in the Shock Trauma. It's been 6 weeks now. We could
      really use some prayers to get him home before Christmas.

      To all the new comers to the group. Welcome, I hope you find
      it as comforting and supportive as we do. Without this group
      we would have gone crazy with all the stuff the doctor have
      told us. It's comforting knowing there is someone out there
      that knows what you are going through.

      To all that have been in the hospital. I hope you are all home
      by now and on the road to feeling better.

      Kyle and Connor have been doing great. Kyle has done very well
      in school and in his therapies. Especially, Speech, he continues
      to improve in voice and signing.

      Hope all is well with everyone.

      Take care,
      Darlene




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