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  • diana.manny
    Luke has been at this Childrens Hospital for 3 weeks now and is sicker than ever. Their infection control policies are horrid. Over a dozen times I have
    Message 1 of 8 , Jun 2, 2008
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      Luke has been at this Childrens Hospital for 3 weeks now and is sicker
      than ever. Their infection control policies are horrid. Over a dozen
      times I have witnessed RT's or RN's drop or leave his oral suction
      cathater out on the bed and then try to put it back in his mouth. They
      haven't been suctioning him out. I was there 7 hours and no one came.
      I did the suctioning myself, but they are watching me like a hawk and I
      have been instructed not to inline suction him. So Luke now has
      Kielbsella pneumonia. He's been running a temp. It took 3 days for
      the attending doc who is the Chief of Peds to finally switch his
      antibiotic to the appropriate one to kill the infection. I was nicely
      told yesterday from the nurse that no one wants to care for Luke and
      was nicely threatened that if I continue to ask to speak to the doctor
      my concerns wont be taken seriously. I was also told that no one there
      has the time to read his previous chart. Its awful....I'm afraid for
      Luke. Any advice???
    • Abbie harrison
      The only advice I can give is to have him transferred. We had to do this with Kaylee and it saved her life! Don t be afraid to tell them you want him
      Message 2 of 8 , Jun 2, 2008
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        The only advice I can give is to have him transferred.  We had to do this with Kaylee and it saved her life!  Don't be afraid to tell them you want him transferred.

        "diana.manny" <diana.manny@...> wrote:
        Luke has been at this Childrens Hospital for 3 weeks now and is sicker
        than ever. Their infection control policies are horrid. Over a dozen
        times I have witnessed RT's or RN's drop or leave his oral suction
        cathater out on the bed and then try to put it back in his mouth. They
        haven't been suctioning him out. I was there 7 hours and no one came.
        I did the suctioning myself, but they are watching me like a hawk and I
        have been instructed not to inline suction him. So Luke now has
        Kielbsella pneumonia. He's been running a temp. It took 3 days for
        the attending doc who is the Chief of Peds to finally switch his
        antibiotic to the appropriate one to kill the infection. I was nicely
        told yesterday from the nurse that no one wants to care for Luke and
        was nicely threatened that if I continue to ask to speak to the doctor
        my concerns wont be taken seriously. I was also told that no one there
        has the time to read his previous chart. Its awful....I'm afraid for
        Luke. Any advice???


      • Scott & Staceyanne Fontana
        I am so sorry for what you are going through. We had the same situation with Mason, he developed several horrible infections while hospitalized in Sacramento
        Message 3 of 8 , Jun 2, 2008
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          I am so sorry for what you are going through. We had the same
          situation with Mason, he developed several horrible infections while
          hospitalized in Sacramento and we had to fight to move him to the San
          Francisco Bay Area. The R/T's in Sacramento used to use a catheter to
          suction the trach, then they would pull their glove off, wrap it
          around the catheter and shove it under his pillow to use over and
          over again. We had such a similar experience with the staff, also.
          He would have huge desats and no one would come, so we'd suction and
          adjust the O2. When they'd finally come in hours later, they'd tell
          us they were watching on the monitor and it wasn't a good "wave
          pattern". We informed them that if they were choking to death, they
          wouldn't lay still either. They fought over who "had" to take Mason's
          care, and let me know daily that they didn't like me and didn't want
          me interfering. It took us 3 months to get Mason away from
          Sacramento because everyone was afraid of Mason's condition/needs,
          but after talking to Dr. Hardy just once, he was moved in 3 days. We
          went home one month later.

          I don't know if Luke is up to it, or you would consider it, but Dr.
          Karen Hardy at Bay Area Pediatric Pulmonary is an excellent
          pulmonologist who has experience in dealing with the
          respiratory/pulmonary issues associated with Myotubular Myopathy. She
          has treated Mason since he was 6 mos. old. He is turning 7 next week.
          I'm not sure how much further San Francisco or Oakland is from where
          you are now. Check out Dr. Hardy's website at http://www.bappmc.com/
          We feel that Dr. Hardy saved our son. She is a huge family advocate,
          and believes that parents should be actively involved in their
          child's care. She takes an active role in your child's case, with
          all other Dr's following her lead. She makes sure your child
          receives the best at all times.

          If Oakland is too far for you, we have a friend who's little girl has
          an undiagnosed neuromuscular disorder and is trached. They treat at
          Valley Children's Hospital in Madera, and love it. She says the
          doctor's are awesome about parents being involved with everything.

          We don't know where you live, but hopefully one of these hospitals
          are close enough to be a posssiblity. We're 4 hours from our Dr's
          and hospital, but they provide such excellent care it's worth it.
          And it's technically only an hour life flight away, and I always fly
          with Mason so he's never alone.

          Please, please, please feel free to call us at any time.
          (530) 893-0315

          Staceyanne Fontana

          --- In Myotubular_Myopathy@yahoogroups.com, "diana.manny"
          <diana.manny@...> wrote:
          >
          > Luke has been at this Childrens Hospital for 3 weeks now and is
          sicker
          > than ever. Their infection control policies are horrid. Over a
          dozen
          > times I have witnessed RT's or RN's drop or leave his oral suction
          > cathater out on the bed and then try to put it back in his mouth.
          They
          > haven't been suctioning him out. I was there 7 hours and no one
          came.
          > I did the suctioning myself, but they are watching me like a hawk
          and I
          > have been instructed not to inline suction him. So Luke now has
          > Kielbsella pneumonia. He's been running a temp. It took 3 days
          for
          > the attending doc who is the Chief of Peds to finally switch his
          > antibiotic to the appropriate one to kill the infection. I was
          nicely
          > told yesterday from the nurse that no one wants to care for Luke
          and
          > was nicely threatened that if I continue to ask to speak to the
          doctor
          > my concerns wont be taken seriously. I was also told that no one
          there
          > has the time to read his previous chart. Its awful....I'm afraid
          for
          > Luke. Any advice???
          >
        • Sheallyn
          this is enranging to me! they don t want to care for him??? he is a small baby with a serious condition and he is in a hospital .. what does that even mean??
          Message 4 of 8 , Jun 2, 2008
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            this is enranging to me! they don't want to care for him??? he is a
            small baby with a serious condition and he is in a hospital .. what
            does that even mean?? :<(

            It may seem like a small step but get in touch with the unit's
            Social Worker, every unit has one! Let him/her know what is going
            on .. they are most often, excellent advocates for us parents. I
            would also request that someone with some experience with CNM/MTM
            come to see your precious little boy .. I understand that "X-MTM" is
            not widely understood by the medical field, but Muscular Dystrophy
            certainly IS, so there must be someone there who can care for Luke
            the way he needs to be cared for.

            It almost sounds like they tossed you all into a medical drop in
            clinic instead of a hosptial ... RN's & RT's leaving suctioning
            equptment out of the holders ...are you kiddin me?? o 0

            I don't want to worry you any more, but these things that are
            happening can and are putting you son at great risk .. Yes, our kids
            are tough, there is not doubt about that .. but they can also be
            very medically fragile at times and in those times .. there is no
            room for error of any kind ...

            pardon my french but I say screw these people that are threatening
            you and do whatever you need to do ... this is simply unacceptable ..


            my thoughts and with you and Lil Luke ...
          • Diana Manny
            Thank you for your support.......San Francisco is like 6 hours away.   We live in southern ca 40 miles east of Los Angeles.  This Childrens
            Message 5 of 8 , Jun 2, 2008
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              Thank you for your support.......San Francisco is like 6 hours away.   We live in southern ca 40 miles east of Los Angeles.  This Childrens Hospital that we are at is utterly ridiculous.  The care is so sub standard.  The infection control practices are disgusting!  I wouldn't do some of these things to a dog let alone a baby.  They clearly dont want to understand or manage Lukes disease.  I called the insurance case manager and asked to be transferred to another hospital.  Thank you for the info on your pulomonary doc.  I will check out her website.  This is so emotionally exhausting.  I'm afraid that they are going to hurt Luke.  Luke was completely bug free and healthy upon arrival there.  He now has an infection that they are unwilling to classify as an infection.  They claim its just colonization and not a true infection.  However clinically hes ill.  So will be do our best and get him out of there!!!

               

              Diana

              --- On Mon, 6/2/08, Scott & Staceyanne Fontana <masonsparents@...> wrote:

              From: Scott & Staceyanne Fontana <masonsparents@...>
              Subject: [Myotubular_Myopathy] Re: Help!!!
              To: Myotubular_Myopathy@yahoogroups.com
              Date: Monday, June 2, 2008, 5:05 PM

              I am so sorry for what you are going through. We had the same
              situation with Mason, he developed several horrible infections while
              hospitalized in Sacramento and we had to fight to move him to the San
              Francisco Bay Area. The R/T's in Sacramento used to use a catheter to
              suction the trach, then they would pull their glove off, wrap it
              around the catheter and shove it under his pillow to use over and
              over again. We had such a similar experience with the staff, also.
              He would have huge desats and no one would come, so we'd suction and
              adjust the O2. When they'd finally come in hours later, they'd tell
              us they were watching on the monitor and it wasn't a good "wave
              pattern". We informed them that if they were choking to death, they
              wouldn't lay still either. They fought over who "had" to take Mason's
              care, and let me know daily that they didn't like me and didn't want
              me interfering. It took us 3 months to get Mason away from
              Sacramento because everyone was afraid of Mason's condition/needs,
              but after talking to Dr. Hardy just once, he was moved in 3 days. We
              went home one month later.

              I don't know if Luke is up to it, or you would consider it, but Dr.
              Karen Hardy at Bay Area Pediatric Pulmonary is an excellent
              pulmonologist who has experience in dealing with the
              respiratory/ pulmonary issues associated with Myotubular Myopathy. She
              has treated Mason since he was 6 mos. old. He is turning 7 next week.
              I'm not sure how much further San Francisco or Oakland is from where
              you are now. Check out Dr. Hardy's website at http://www.bappmc. com/
              We feel that Dr. Hardy saved our son. She is a huge family advocate,
              and believes that parents should be actively involved in their
              child's care. She takes an active role in your child's case, with
              all other Dr's following her lead. She makes sure your child
              receives the best at all times.

              If Oakland is too far for you, we have a friend who's little girl has
              an undiagnosed neuromuscular disorder and is trached. They treat at
              Valley Children's Hospital in Madera, and love it. She says the
              doctor's are awesome about parents being involved with everything.

              We don't know where you live, but hopefully one of these hospitals
              are close enough to be a posssiblity. We're 4 hours from our Dr's
              and hospital, but they provide such excellent care it's worth it.
              And it's technically only an hour life flight away, and I always fly
              with Mason so he's never alone.

              Please, please, please feel free to call us at any time.
              (530) 893-0315

              Staceyanne Fontana

              --- In Myotubular_Myopathy @yahoogroups. com, "diana.manny"
              <diana.manny@ ...> wrote:
              >
              > Luke has been at this Childrens Hospital for 3 weeks now and is
              sicker
              > than ever. Their infection control policies are horrid. Over a
              dozen
              > times I have witnessed RT's or RN's drop or leave his oral suction
              > cathater out on the bed and then try to put it back in his mouth.
              They
              > haven't been suctioning him out. I was there 7 hours and no one
              came.
              > I did the suctioning myself, but they are watching me like a hawk
              and I
              > have been instructed not to inline suction him. So Luke now has
              > Kielbsella pneumonia. He's been running a temp. It took 3 days
              for
              > the attending doc who is the Chief of Peds to finally switch his
              > antibiotic to the appropriate one to kill the infection. I was
              nicely
              > told yesterday from the nurse that no one wants to care for Luke
              and
              > was nicely threatened that if I continue to ask to speak to the
              doctor
              > my concerns wont be taken seriously. I was also told that no one
              there
              > has the time to read his previous chart. Its awful....I'm afraid
              for
              > Luke. Any advice???
              >


            • dslawton1
              ... sicker ... dozen ... They ... came. ... and I ... for ... nicely ... and ... doctor ... there ... for ... Immediately, demand to speak to the Risk
              Message 6 of 8 , Jun 2, 2008
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                --- In Myotubular_Myopathy@yahoogroups.com, "diana.manny"
                <diana.manny@...> wrote:
                >
                > Luke has been at this Childrens Hospital for 3 weeks now and is
                sicker
                > than ever. Their infection control policies are horrid. Over a
                dozen
                > times I have witnessed RT's or RN's drop or leave his oral suction
                > cathater out on the bed and then try to put it back in his mouth.
                They
                > haven't been suctioning him out. I was there 7 hours and no one
                came.
                > I did the suctioning myself, but they are watching me like a hawk
                and I
                > have been instructed not to inline suction him. So Luke now has
                > Kielbsella pneumonia. He's been running a temp. It took 3 days
                for
                > the attending doc who is the Chief of Peds to finally switch his
                > antibiotic to the appropriate one to kill the infection. I was
                nicely
                > told yesterday from the nurse that no one wants to care for Luke
                and
                > was nicely threatened that if I continue to ask to speak to the
                doctor
                > my concerns wont be taken seriously. I was also told that no one
                there
                > has the time to read his previous chart. Its awful....I'm afraid
                for
                > Luke. Any advice???

                Immediately, demand to speak to the Risk Management Officer. Write
                down everything that you are seeing, insist on a meeting with the
                Risk Management Officer, the Head Nurse of the ICU, the Medical
                Director of the ICU, the Medical Director of the Respiratory
                Department and any charge nurses that you are encountering on a
                regular basis. Tell them that this meeting needs to take place within
                the next 24 hours.

                I will tell you however, that it is common for oral suction
                catherters to be left on the beds. Don't let this be your main
                complaint. One thing that helps these kids, that isn't done so much
                anymore is what is called good "pulmonary toileting". It includes
                turning every two hours, CPT, every three to four hours with good
                suctioning to prevent and treat atelactasis.

                I hope that you have the nurse's name written down who told you that
                no one wants to care for your son. Do not hesitate to bring this up
                in your meeting.

                Good luck. We are our kids ambassadors and people need to listen to
                us.


                >
              • WELLS CINDY
                hi, i am so sorry for what you are having to be put through. i know how it feels. my son has been in that position before, and now i contact the nurse
                Message 7 of 8 , Jun 2, 2008
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                  hi, i am so sorry for what you are having to be put through. i know how it feels. my son has been in that position before, and now i contact the nurse supervisors supervisor, i have made many written complaints also. my son, joey, has been a patient at los angeles childrens hospital before and has received great treatment. he is 20 now, so he is too old to go there but i know they will take care of you and your son well. i also work there in the radiology dept. so if you do come please look me up. cindy wells in radiology.

                  take care and be persistent in getting the care your son needs.
                  life is too short to sweat the small things. enjoy life while you can.
                  cindy wells

                  --- On Mon, 6/2/08, Diana Manny <diana.manny@...> wrote:

                  From: Diana Manny <diana.manny@...>
                  Subject: Re: [Myotubular_Myopathy] Re: Help!!!
                  To: Myotubular_Myopathy@yahoogroups.com
                  Date: Monday, June 2, 2008, 1:47 PM

                  Thank you for your support..... ..San Francisco is like 6 hours away.   We live in southern ca 40 miles east of Los Angeles.  This Childrens Hospital that we are at is utterly ridiculous.  The care is so sub standard.  The infection control practices are disgusting!  I wouldn't do some of these things to a dog let alone a baby.  They clearly dont want to understand or manage Lukes disease.  I called the insurance case manager and asked to be transferred to another hospital.  Thank you for the info on your pulomonary doc.  I will check out her website.  This is so emotionally exhausting.  I'm afraid that they are going to hurt Luke.  Luke was completely bug free and healthy upon arrival there.  He now has an infection that they are unwilling to classify as an infection.  They claim its just colonization and not a true infection.  However clinically hes ill.  So will be do our best and get him out of there!!!

                   

                  Diana

                  --- On Mon, 6/2/08, Scott & Staceyanne Fontana <masonsparents@ yahoo.com> wrote:

                  From: Scott & Staceyanne Fontana <masonsparents@ yahoo.com>
                  Subject: [Myotubular_ Myopathy] Re: Help!!!
                  To: Myotubular_Myopathy @yahoogroups. com
                  Date: Monday, June 2, 2008, 5:05 PM

                  I am so sorry for what you are going through. We had the same
                  situation with Mason, he developed several horrible infections while
                  hospitalized in Sacramento and we had to fight to move him to the San
                  Francisco Bay Area. The R/T's in Sacramento used to use a catheter to
                  suction the trach, then they would pull their glove off, wrap it
                  around the catheter and shove it under his pillow to use over and
                  over again. We had such a similar experience with the staff, also.
                  He would have huge desats and no one would come, so we'd suction and
                  adjust the O2. When they'd finally come in hours later, they'd tell
                  us they were watching on the monitor and it wasn't a good "wave
                  pattern". We informed them that if they were choking to death, they
                  wouldn't lay still either. They fought over who "had" to take Mason's
                  care, and let me know daily that they didn't like me and didn't want
                  me interfering. It took us 3 months to get Mason away from
                  Sacramento because everyone was afraid of Mason's condition/needs,
                  but after talking to Dr. Hardy just once, he was moved in 3 days. We
                  went home one month later.

                  I don't know if Luke is up to it, or you would consider it, but Dr.
                  Karen Hardy at Bay Area Pediatric Pulmonary is an excellent
                  pulmonologist who has experience in dealing with the
                  respiratory/ pulmonary issues associated with Myotubular Myopathy. She
                  has treated Mason since he was 6 mos. old. He is turning 7 next week.
                  I'm not sure how much further San Francisco or Oakland is from where
                  you are now. Check out Dr. Hardy's website at http://www.bappmc. com/
                  We feel that Dr. Hardy saved our son. She is a huge family advocate,
                  and believes that parents should be actively involved in their
                  child's care. She takes an active role in your child's case, with
                  all other Dr's following her lead. She makes sure your child
                  receives the best at all times.

                  If Oakland is too far for you, we have a friend who's little girl has
                  an undiagnosed neuromuscular disorder and is trached. They treat at
                  Valley Children's Hospital in Madera, and love it. She says the
                  doctor's are awesome about parents being involved with everything.

                  We don't know where you live, but hopefully one of these hospitals
                  are close enough to be a posssiblity. We're 4 hours from our Dr's
                  and hospital, but they provide such excellent care it's worth it.
                  And it's technically only an hour life flight away, and I always fly
                  with Mason so he's never alone.

                  Please, please, please feel free to call us at any time.
                  (530) 893-0315

                  Staceyanne Fontana

                  --- In Myotubular_Myopathy @yahoogroups. com, "diana.manny"
                  <diana.manny@ ...> wrote:
                  >
                  > Luke has been at this Childrens Hospital for 3 weeks now and is
                  sicker
                  > than ever. Their infection control policies are horrid. Over a
                  dozen
                  > times I have witnessed RT's or RN's drop or leave his oral suction
                  > cathater out on the bed and then try to put it back in his mouth.
                  They
                  > haven't been suctioning him out. I was there 7 hours and no one
                  came.
                  > I did the suctioning myself, but they are watching me like a hawk
                  and I
                  > have been instructed not to inline suction him. So Luke now has
                  > Kielbsella pneumonia. He's been running a temp. It took 3 days
                  for
                  > the attending doc who is the Chief of Peds to finally switch his
                  > antibiotic to the appropriate one to kill the infection. I was
                  nicely
                  > told yesterday from the nurse that no one wants to care for Luke
                  and
                  > was nicely threatened that if I continue to ask to speak to the
                  doctor
                  > my concerns wont be taken seriously. I was also told that no one
                  there
                  > has the time to read his previous chart. Its awful....I'm afraid
                  for
                  > Luke. Any advice???
                  >



                • Sheallyn
                  good suggestion on the turning and chest physio ...we were religious about doing this with Kaden ... only time we didn t flip him is if he was clearly satting
                  Message 8 of 8 , Jun 3, 2008
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                    good suggestion on the turning and chest physio ...we were religious
                    about doing this with Kaden ... only time we didn't flip him is if he
                    was clearly satting better on one side over the other. Either or
                    though, both very important things to do reguarly, as well as regular
                    suction!


                    btw, nice to have you here! :<)
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