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Re: Fw: Andrew's life is making a difference! (long)

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  • Linda
    Anne, I know this reply is really late but I just read this email and I am so impressed. It sounds to me like little Andrew is busy in heaven like my mom who
    Message 1 of 7 , Mar 21, 1998
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      Anne, I know this reply is really late but I just read this email and I am
      so impressed. It sounds to me like little Andrew is busy in heaven like my
      mom who helps me. I never would have come across the lipoic and gone back to
      my original study ( 7 yrs previous) of mito disorder if it hadn't been for
      her intervention I believe. I really think that loved ones can help us from
      the other side. Like they say God works in mysterious ways His wonders to
      perform!
      This is a wonderful heartwarming story. Linda S.

      -----Original Message-----
      From: Anne and Lou Juhlmann <juhlmann@...>
      To: mito@onelist.com <mito@onelist.com>
      Date: Tuesday, February 16, 1999 11:45 AM
      Subject: [Mito] Fw: Andrew's life is making a difference! (long)


      >From: "Anne and Lou Juhlmann" <juhlmann@...>
      >
      >Some of you may remember that a few days before Thanks Giving little Andrew
      >Bishop died, the son of my friend's Sherry and Dave. I will always miss
      >Andrew but Sherry's letter today brought tears to my eyes. My children go
      >to the hospital that Andrew went to and they have had _invasive_ procedures
      >done in the radiology dept and I am sure will again as they grow up.
      >Because of Sherry and Dave's dedication and determination to make sure
      >that lessons are learned from Andrew's horrific experience my children and
      >many others will be safer. I asked Sherry if I could forward this as I
      >knew many of you would want to read it.
      >Anne
      >***************************************************************************
      *
      >***
      >
      >>
      >> Andrew's life is making a difference, We have just received wonderful
      >news.
      >> But first, some background
      >>
      >> We have just received the final autopsy report and as suspected it does
      >> appear that the GJ tube (placed in the g-tube stoma site and threaded to
      >> the intestine) we placed rubbed against his intestine thus allowing
      >> bacteria to get into the bloodstream . eventually the intestine was
      >> perforated.
      >>
      >> On Friday night the GJ tube was placed by the head of radiology. he had
      >> left by the time we had asked our question, 'what should we look for ?
      >> what are the complications? The person who remained (nurse, tech.??)
      >said
      >> there are no complications, nothing to look for. (BTW - this person is
      >no
      >> longer dealing with patients at this hospital). The radiologist, who
      >> happens to know the most about these GJ tubes in this hospital, told us
      >> later that he routinely does not volunteer this information to patients
      >if
      >> they are referred to by a GI outside the hospital. (politics)
      >>
      >> On Saturday we returned to the hospital for pain and discomfort for
      >Andrew,
      >> the radiologist and GI on call were not aware of tube rubbing causing
      >> discomfort. they looked for a hole (which had not been manifested yet)
      >and
      >> said there was no way that the tube was causing his discomfort and sent
      >us
      >> home. In hind sight, we should have had a DR to rule out other causes as
      >> we did check into an ER for pain and left with out knowing why. No
      >medical
      >> history or stats were taken. we let it go for 24 hours (without any
      >> instruction to do anything else) and by Monday he was still in discomfort
      >> so we took him into our ped. who immediately pulled the tube. By Monday,
      >> however it was too late, he had gone into septic shock and died Tuesday.
      >>
      >> We have been struggling with the fact that politics stood in the way of
      >> preventing Andrew's death. and an attitude that parents do not need to
      >know
      >> everything. If we had known that tube rubbing caused irritation, we
      >would
      >> have told them on Sat, to check for this, but alas we were not told. We
      >> could not let this happen to another child. So we have come up with a
      >list
      >> of recommendations to include parent consent, documented risks,
      >> complications, etc. Based on initial conversations with the hospital, we
      >> wereprepared for an uphill battle. BTW - Thanks Ann and Sharon who
      >> offered to review this recommendation for me. I was just about ready to
      >> send the draft off for review when....
      >>
      >> HERE"S THE GOOD NEWS!!!
      >>
      >> Last night the head of radiology called and asked for our help. He said
      >he
      >> has basically "seen the light" in that he just had experienced a bowel
      >> obstruction and perforated intestine. he could have died. As a side
      >note,
      >> he too had a child who died and apparntly had some special needs. But
      >> before surgery no consent form was given, no explanations, etc., and he
      >DID
      >> NOT like it. He knows that parents of special needs children know so much
      >> more than the average parent and that it is in their best interest if
      >they
      >> are told everything. I am sorry he had to go through such an ordeal to
      >> realize that patient education is so important, but I am glad he came to
      >> the conclusion. he said he thought about Andrew through out his recovery
      >> and is making changes . they do between 3-7 GJ tubes a day so this does
      >> affect many people.
      >>
      >> He has 4 intervention nurses that he has hand-picked on staff that will
      >put
      >> together a patient interview form, a patient education form outlining all
      >> risks, complications, phone numbers to call and so on. before anyone
      >gets
      >> a GJ tube the firs time, they will be interviewed to make sure this is
      >the
      >> best solution for the problem at hand. then they will be educated. He
      >> wants us to review the forms and make suggestions. There were still
      >risks
      >> he talked about that I still did not know, certain formulas can cause
      >> necrosis (dead tissue) when dripped on the intestine and that every
      >> verbal patient he has had says this tube is painful and so on. We were
      >> afraid our recommendations would be an uphill battle to implement but it
      >> appears they are willing and actually making the changes! This is such
      >> good news, what happened to Andrew should nerve happen again to another
      >> child. This is what we wanted.
      >> In addition he said there are 10 other "invasive" procedures that are
      >> treatd int he same manner and wants tor evamp all of those as well.
      >>
      >> A big burden has been lifted. once the forms are complete, I will post
      >to
      >> the G tube list to inform others and maybe they can take the forms to
      >their
      >> GI's and hospitals as well.
      >>
      >> Thanks for listening!
      >>
      >> I do have an evil side of me, for about 10 minutes last night, I was
      >> disapointed that we were not going to SUE them for failing to diagnose,
      >> which was our last resort if they refused to implement any of our
      >> reccomended changes, but i am past that now as the reason to sue was to
      >> make changes and we can accomplish that without a painful lawsuit.
      >>
      >> Sherry Bishop
      >> Mother to Angel Andrew - 6-10-97 11-24-98
      >> GERD, G-Tube, Hypotonia, Hydrocephalus, Visually & Hearing impaired,
      >> scoliosis, undiagnosed genetic syndrome, and who has the most pleasant
      >> disposition.
      >>
      >>
      >> ------------------------------------------------------------------------
      >> To unsubscribe from this mailing list, or to change your subscription
      >> to digest, go to the ONElist web site, at http://www.onelist.com and
      >> select the User Center link from the menu bar on the left.
      >
      >------------------------------------------------------------------------
      >To unsubscribe from this mailing list, or to change your subscription
      >to digest, go to the ONElist web site, at http://www.onelist.com and
      >select the User Center link from the menu bar on the left.
      >------------------------------------------------------------------------
      >Brought to you by www.imdn.org - an on-line support group for those
      affected by mitochondrial disease.
      >
    • Anne and Lou Juhlmann
      Some of you may remember that a few days before Thanks Giving little Andrew Bishop died, the son of my friend s Sherry and Dave. I will always miss Andrew but
      Message 2 of 7 , Feb 16, 1999
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        Some of you may remember that a few days before Thanks Giving little Andrew
        Bishop died, the son of my friend's Sherry and Dave. I will always miss
        Andrew but Sherry's letter today brought tears to my eyes. My children go
        to the hospital that Andrew went to and they have had _invasive_ procedures
        done in the radiology dept and I am sure will again as they grow up.
        Because of Sherry and Dave's dedication and determination to make sure
        that lessons are learned from Andrew's horrific experience my children and
        many others will be safer. I asked Sherry if I could forward this as I
        knew many of you would want to read it.
        Anne
        ****************************************************************************
        ***

        >
        > Andrew's life is making a difference, We have just received wonderful
        news.
        > But first, some background
        >
        > We have just received the final autopsy report and as suspected it does
        > appear that the GJ tube (placed in the g-tube stoma site and threaded to
        > the intestine) we placed rubbed against his intestine thus allowing
        > bacteria to get into the bloodstream . eventually the intestine was
        > perforated.
        >
        > On Friday night the GJ tube was placed by the head of radiology. he had
        > left by the time we had asked our question, 'what should we look for ?
        > what are the complications? The person who remained (nurse, tech.??)
        said
        > there are no complications, nothing to look for. (BTW - this person is
        no
        > longer dealing with patients at this hospital). The radiologist, who
        > happens to know the most about these GJ tubes in this hospital, told us
        > later that he routinely does not volunteer this information to patients
        if
        > they are referred to by a GI outside the hospital. (politics)
        >
        > On Saturday we returned to the hospital for pain and discomfort for
        Andrew,
        > the radiologist and GI on call were not aware of tube rubbing causing
        > discomfort. they looked for a hole (which had not been manifested yet)
        and
        > said there was no way that the tube was causing his discomfort and sent
        us
        > home. In hind sight, we should have had a DR to rule out other causes as
        > we did check into an ER for pain and left with out knowing why. No
        medical
        > history or stats were taken. we let it go for 24 hours (without any
        > instruction to do anything else) and by Monday he was still in discomfort
        > so we took him into our ped. who immediately pulled the tube. By Monday,
        > however it was too late, he had gone into septic shock and died Tuesday.
        >
        > We have been struggling with the fact that politics stood in the way of
        > preventing Andrew's death. and an attitude that parents do not need to
        know
        > everything. If we had known that tube rubbing caused irritation, we
        would
        > have told them on Sat, to check for this, but alas we were not told. We
        > could not let this happen to another child. So we have come up with a
        list
        > of recommendations to include parent consent, documented risks,
        > complications, etc. Based on initial conversations with the hospital, we
        > wereprepared for an uphill battle. BTW - Thanks Ann and Sharon who
        > offered to review this recommendation for me. I was just about ready to
        > send the draft off for review when....
        >
        > HERE"S THE GOOD NEWS!!!
        >
        > Last night the head of radiology called and asked for our help. He said
        he
        > has basically "seen the light" in that he just had experienced a bowel
        > obstruction and perforated intestine. he could have died. As a side
        note,
        > he too had a child who died and apparntly had some special needs. But
        > before surgery no consent form was given, no explanations, etc., and he
        DID
        > NOT like it. He knows that parents of special needs children know so much
        > more than the average parent and that it is in their best interest if
        they
        > are told everything. I am sorry he had to go through such an ordeal to
        > realize that patient education is so important, but I am glad he came to
        > the conclusion. he said he thought about Andrew through out his recovery
        > and is making changes . they do between 3-7 GJ tubes a day so this does
        > affect many people.
        >
        > He has 4 intervention nurses that he has hand-picked on staff that will
        put
        > together a patient interview form, a patient education form outlining all
        > risks, complications, phone numbers to call and so on. before anyone
        gets
        > a GJ tube the firs time, they will be interviewed to make sure this is
        the
        > best solution for the problem at hand. then they will be educated. He
        > wants us to review the forms and make suggestions. There were still
        risks
        > he talked about that I still did not know, certain formulas can cause
        > necrosis (dead tissue) when dripped on the intestine and that every
        > verbal patient he has had says this tube is painful and so on. We were
        > afraid our recommendations would be an uphill battle to implement but it
        > appears they are willing and actually making the changes! This is such
        > good news, what happened to Andrew should nerve happen again to another
        > child. This is what we wanted.
        > In addition he said there are 10 other "invasive" procedures that are
        > treatd int he same manner and wants tor evamp all of those as well.
        >
        > A big burden has been lifted. once the forms are complete, I will post
        to
        > the G tube list to inform others and maybe they can take the forms to
        their
        > GI's and hospitals as well.
        >
        > Thanks for listening!
        >
        > I do have an evil side of me, for about 10 minutes last night, I was
        > disapointed that we were not going to SUE them for failing to diagnose,
        > which was our last resort if they refused to implement any of our
        > reccomended changes, but i am past that now as the reason to sue was to
        > make changes and we can accomplish that without a painful lawsuit.
        >
        > Sherry Bishop
        > Mother to Angel Andrew - 6-10-97 11-24-98
        > GERD, G-Tube, Hypotonia, Hydrocephalus, Visually & Hearing impaired,
        > scoliosis, undiagnosed genetic syndrome, and who has the most pleasant
        > disposition.
        >
        >
        > ------------------------------------------------------------------------
        > To unsubscribe from this mailing list, or to change your subscription
        > to digest, go to the ONElist web site, at http://www.onelist.com and
        > select the User Center link from the menu bar on the left.
      • Jeffrey Downs
        What a high price for a parent to pay to get a doctor to change his protocol. No one should have to goe through what Sherry did. I am so sorry that you lost
        Message 3 of 7 , Feb 16, 1999
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          What a high price for a parent to pay to get a doctor to change his protocol. No one should have to goe
          through what Sherry did. I am so sorry that you lost Andrew......at least something good came of this.

          <<<HUGS>>>.

          Lori
        • GOLYNIE@xxx.xxx
          Dearest Anne: What a wonderful thing to share...thank you very much. I wonder if Sherry Knows about Project DOCC. P.DOCC is a team effort whenre Parents help
          Message 4 of 7 , Feb 16, 1999
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            Dearest Anne:

            What a wonderful thing to share...thank you very much. I wonder if Sherry
            Knows about Project DOCC. P.DOCC is a team effort whenre Parents help train
            Interns, so it changes medicine from the inside out. The Project DOCC Parent-
            organizers would love to talk to her, I know. Here is the Project Doc
            information:

            Project DOCC
            (Delivery of Chronic Care)
            One South Road, Oyster Bay, N.Y. 11771-1905
            516-365-0959/ fax 516-365-4339
            email ProjDOCC@...


            Contacts:
            Donna Appell, Maggie Hoffman, Nancy Speller

            PLEASE check this program out! I HIGHLY recomend it.

            Lynnie Morgan
            Wife, Mother, Advocate
          • Stacimom@xxx.xxx
            Dear Anne, please fwd my thanks to Sherry, and I m lifting them up to Andrew. Sunday night, as it turns out that Staci was getting sick with an Upper Resp.
            Message 5 of 7 , Feb 16, 1999
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              Dear Anne, please fwd my thanks to Sherry, and I'm lifting them up to Andrew.
              Sunday night, as it turns out that Staci was getting sick with an Upper Resp.
              infection, ear infection, etc., she expressed discomfort with her abdomen.
              She has a Mic-Key Button, for GERD, poor strength to get bm's out on her own,
              etc. She had already had her suppository and b.m.--so we thought it was just
              gas, did the usual tummy rub, abd. crunch with leglifts--helped some. Then
              Geo. hooked the feeding back up, and went to sleep. Well, he was awakened in
              a puddle of pediasure w\ fiber, some partially digested. Staci had actually
              pulled the locking mechanism out of the middle of the Mic-Key--relieving the
              pressure in her tummy, but leaving the balloon and the main tubing intact
              within her. Maybe Andrew helped tug on the tubing. You never can tell.
              Thanks, Andrew. God Bless, kate.e P.S. Thanks from Staci.
            • dave bishop
              I also want to thank JoAnne from this list who contributed to our list of reccomendations and offered to review the draft (that I never had to send!) Sherry
              Message 6 of 7 , Feb 17, 1999
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                I also want to thank JoAnne from this list who contributed to our list of
                reccomendations and offered to review the draft (that I never had to send!)


                Sherry Bishop
                Mother to Angel Andrew - 6-10-97 11-24-98
                GERD, G-Tube, Hypotonia, Hydrocephalus, Visually & Hearing impaired,
                scoliosis, undiagnosed genetic syndrome, and who has the most pleasant
                disposition.

                ----------
                > From: Anne and Lou Juhlmann <juhlmann@...>
                > To: mito@onelist.com
                > Subject: [Mito] Fw: Andrew's life is making a difference! (long)
                > Date: Tuesday, February 16, 1999 1:39 PM
                >
                > From: "Anne and Lou Juhlmann" <juhlmann@...>
                >
                > Some of you may remember that a few days before Thanks Giving little
                Andrew
                > Bishop died, the son of my friend's Sherry and Dave. I will always miss
                > Andrew but Sherry's letter today brought tears to my eyes. My children
                go
                > to the hospital that Andrew went to and they have had _invasive_
                procedures
                > done in the radiology dept and I am sure will again as they grow up.
                > Because of Sherry and Dave's dedication and determination to make sure
                > that lessons are learned from Andrew's horrific experience my children
                and
                > many others will be safer. I asked Sherry if I could forward this as I
                > knew many of you would want to read it.
                > Anne
                >
                ****************************************************************************

                > ***
                >
                > >
                > > Andrew's life is making a difference, We have just received wonderful
                > news.
                > > But first, some background
                > >
                > > We have just received the final autopsy report and as suspected it does
                > > appear that the GJ tube (placed in the g-tube stoma site and threaded
                to
                > > the intestine) we placed rubbed against his intestine thus allowing
                > > bacteria to get into the bloodstream . eventually the intestine was
                > > perforated.
                > >
                > > On Friday night the GJ tube was placed by the head of radiology. he had
                > > left by the time we had asked our question, 'what should we look for ?
                > > what are the complications? The person who remained (nurse, tech.??)
                > said
                > > there are no complications, nothing to look for. (BTW - this person
                is
                > no
                > > longer dealing with patients at this hospital). The radiologist, who
                > > happens to know the most about these GJ tubes in this hospital, told
                us
                > > later that he routinely does not volunteer this information to patients
                > if
                > > they are referred to by a GI outside the hospital. (politics)
                > >
                > > On Saturday we returned to the hospital for pain and discomfort for
                > Andrew,
                > > the radiologist and GI on call were not aware of tube rubbing causing
                > > discomfort. they looked for a hole (which had not been manifested yet)
                > and
                > > said there was no way that the tube was causing his discomfort and sent
                > us
                > > home. In hind sight, we should have had a DR to rule out other causes
                as
                > > we did check into an ER for pain and left with out knowing why. No
                > medical
                > > history or stats were taken. we let it go for 24 hours (without any
                > > instruction to do anything else) and by Monday he was still in
                discomfort
                > > so we took him into our ped. who immediately pulled the tube. By
                Monday,
                > > however it was too late, he had gone into septic shock and died
                Tuesday.
                > >
                > > We have been struggling with the fact that politics stood in the way of
                > > preventing Andrew's death. and an attitude that parents do not need to
                > know
                > > everything. If we had known that tube rubbing caused irritation, we
                > would
                > > have told them on Sat, to check for this, but alas we were not told. We
                > > could not let this happen to another child. So we have come up with a
                > list
                > > of recommendations to include parent consent, documented risks,
                > > complications, etc. Based on initial conversations with the hospital,
                we
                > > wereprepared for an uphill battle. BTW - Thanks Ann and Sharon who
                > > offered to review this recommendation for me. I was just about ready
                to
                > > send the draft off for review when....
                > >
                > > HERE"S THE GOOD NEWS!!!
                > >
                > > Last night the head of radiology called and asked for our help. He said
                > he
                > > has basically "seen the light" in that he just had experienced a bowel
                > > obstruction and perforated intestine. he could have died. As a side
                > note,
                > > he too had a child who died and apparntly had some special needs. But
                > > before surgery no consent form was given, no explanations, etc., and he
                > DID
                > > NOT like it. He knows that parents of special needs children know so
                much
                > > more than the average parent and that it is in their best interest if
                > they
                > > are told everything. I am sorry he had to go through such an ordeal to
                > > realize that patient education is so important, but I am glad he came
                to
                > > the conclusion. he said he thought about Andrew through out his
                recovery
                > > and is making changes . they do between 3-7 GJ tubes a day so this does
                > > affect many people.
                > >
                > > He has 4 intervention nurses that he has hand-picked on staff that will
                > put
                > > together a patient interview form, a patient education form outlining
                all
                > > risks, complications, phone numbers to call and so on. before anyone
                > gets
                > > a GJ tube the firs time, they will be interviewed to make sure this is
                > the
                > > best solution for the problem at hand. then they will be educated. He
                > > wants us to review the forms and make suggestions. There were still
                > risks
                > > he talked about that I still did not know, certain formulas can cause
                > > necrosis (dead tissue) when dripped on the intestine and that every
                > > verbal patient he has had says this tube is painful and so on. We
                were
                > > afraid our recommendations would be an uphill battle to implement but
                it
                > > appears they are willing and actually making the changes! This is such
                > > good news, what happened to Andrew should nerve happen again to
                another
                > > child. This is what we wanted.
                > > In addition he said there are 10 other "invasive" procedures that are
                > > treatd int he same manner and wants tor evamp all of those as well.
                > >
                > > A big burden has been lifted. once the forms are complete, I will post
                > to
                > > the G tube list to inform others and maybe they can take the forms to
                > their
                > > GI's and hospitals as well.
                > >
                > > Thanks for listening!
                > >
                > > I do have an evil side of me, for about 10 minutes last night, I was
                > > disapointed that we were not going to SUE them for failing to diagnose,
                > > which was our last resort if they refused to implement any of our
                > > reccomended changes, but i am past that now as the reason to sue was to
                > > make changes and we can accomplish that without a painful lawsuit.
                > >
                > > Sherry Bishop
                > > Mother to Angel Andrew - 6-10-97 11-24-98
                > > GERD, G-Tube, Hypotonia, Hydrocephalus, Visually & Hearing impaired,
                > > scoliosis, undiagnosed genetic syndrome, and who has the most pleasant
                > > disposition.
                > >
                > >
                > >
                ------------------------------------------------------------------------
                > > To unsubscribe from this mailing list, or to change your subscription
                > > to digest, go to the ONElist web site, at http://www.onelist.com and
                > > select the User Center link from the menu bar on the left.
                >
                > ------------------------------------------------------------------------
                > To unsubscribe from this mailing list, or to change your subscription
                > to digest, go to the ONElist web site, at http://www.onelist.com and
                > select the User Center link from the menu bar on the left.
                > ------------------------------------------------------------------------
                > Brought to you by www.imdn.org - an on-line support group for those
                affected by mitochondrial disease.
              • bccts5
                Hello Just wanted to take a moment to reply. I just read about little Andrew and I am shocked and sadden. I know it s been along time, but I hope you know all
                Message 7 of 7 , Aug 9, 2006
                • 0 Attachment
                  Hello
                  Just wanted to take a moment to reply. I just read about little
                  Andrew and I am shocked and sadden.
                  I know it's been along time, but I hope you know all the people's
                  lives you touched with his story. God Bless all of you's. My
                  granddaughter is one year old and going from an NG tube to a peg and
                  then a button, we just learned today. I don't know much about the
                  whole process but I would love for someone to share their
                  experiences with these. What is the one list? Hope it was ok to
                  reply I'm a new member and don't want to but in.
                  Mito@yahoogroups.com, "Anne and Lou Juhlmann" <juhlmann@...
                  wrote:
                  >
                  > Some of you may remember that a few days before Thanks Giving
                  little Andrew
                  > Bishop died, the son of my friend's Sherry and Dave. I will
                  always miss
                  > Andrew but Sherry's letter today brought tears to my eyes. My
                  children go
                  > to the hospital that Andrew went to and they have had _invasive_
                  procedures
                  > done in the radiology dept and I am sure will again as they grow
                  up.
                  > Because of Sherry and Dave's dedication and determination to make
                  sure
                  > that lessons are learned from Andrew's horrific experience my
                  children and
                  > many others will be safer. I asked Sherry if I could forward this
                  as I
                  > knew many of you would want to read it.
                  > Anne
                  >
                  *********************************************************************
                  *******
                  > ***
                  >
                  > >
                  > > Andrew's life is making a difference, We have just received
                  wonderful
                  > news.
                  > > But first, some background
                  > >
                  > > We have just received the final autopsy report and as suspected
                  it does
                  > > appear that the GJ tube (placed in the g-tube stoma site and
                  threaded to
                  > > the intestine) we placed rubbed against his intestine thus
                  allowing
                  > > bacteria to get into the bloodstream . eventually the intestine
                  was
                  > > perforated.
                  > >
                  > > On Friday night the GJ tube was placed by the head of radiology.
                  he had
                  > > left by the time we had asked our question, 'what should we
                  look for ?
                  > > what are the complications? The person who remained (nurse,
                  tech.??)
                  > said
                  > > there are no complications, nothing to look for. (BTW - this
                  person is
                  > no
                  > > longer dealing with patients at this hospital). The
                  radiologist, who
                  > > happens to know the most about these GJ tubes in this hospital,
                  told us
                  > > later that he routinely does not volunteer this information to
                  patients
                  > if
                  > > they are referred to by a GI outside the hospital. (politics)
                  > >
                  > > On Saturday we returned to the hospital for pain and discomfort
                  for
                  > Andrew,
                  > > the radiologist and GI on call were not aware of tube rubbing
                  causing
                  > > discomfort. they looked for a hole (which had not been
                  manifested yet)
                  > and
                  > > said there was no way that the tube was causing his discomfort
                  and sent
                  > us
                  > > home. In hind sight, we should have had a DR to rule out other
                  causes as
                  > > we did check into an ER for pain and left with out knowing why.
                  No
                  > medical
                  > > history or stats were taken. we let it go for 24 hours (without
                  any
                  > > instruction to do anything else) and by Monday he was still in
                  discomfort
                  > > so we took him into our ped. who immediately pulled the tube. By
                  Monday,
                  > > however it was too late, he had gone into septic shock and died
                  Tuesday.
                  > >
                  > > We have been struggling with the fact that politics stood in the
                  way of
                  > > preventing Andrew's death. and an attitude that parents do not
                  need to
                  > know
                  > > everything. If we had known that tube rubbing caused
                  irritation, we
                  > would
                  > > have told them on Sat, to check for this, but alas we were not
                  told. We
                  > > could not let this happen to another child. So we have come up
                  with a
                  > list
                  > > of recommendations to include parent consent, documented risks,
                  > > complications, etc. Based on initial conversations with the
                  hospital, we
                  > > wereprepared for an uphill battle. BTW - Thanks Ann and Sharon
                  who
                  > > offered to review this recommendation for me. I was just about
                  ready to
                  > > send the draft off for review when....
                  > >
                  > > HERE"S THE GOOD NEWS!!!
                  > >
                  > > Last night the head of radiology called and asked for our help.
                  He said
                  > he
                  > > has basically "seen the light" in that he just had experienced a
                  bowel
                  > > obstruction and perforated intestine. he could have died. As a
                  side
                  > note,
                  > > he too had a child who died and apparntly had some special
                  needs. But
                  > > before surgery no consent form was given, no explanations, etc.,
                  and he
                  > DID
                  > > NOT like it. He knows that parents of special needs children
                  know so much
                  > > more than the average parent and that it is in their best
                  interest if
                  > they
                  > > are told everything. I am sorry he had to go through such an
                  ordeal to
                  > > realize that patient education is so important, but I am glad he
                  came to
                  > > the conclusion. he said he thought about Andrew through out his
                  recovery
                  > > and is making changes . they do between 3-7 GJ tubes a day so
                  this does
                  > > affect many people.
                  > >
                  > > He has 4 intervention nurses that he has hand-picked on staff
                  that will
                  > put
                  > > together a patient interview form, a patient education form
                  outlining all
                  > > risks, complications, phone numbers to call and so on. before
                  anyone
                  > gets
                  > > a GJ tube the firs time, they will be interviewed to make sure
                  this is
                  > the
                  > > best solution for the problem at hand. then they will be
                  educated. He
                  > > wants us to review the forms and make suggestions. There were
                  still
                  > risks
                  > > he talked about that I still did not know, certain formulas can
                  cause
                  > > necrosis (dead tissue) when dripped on the intestine and that
                  every
                  > > verbal patient he has had says this tube is painful and so on.
                  We were
                  > > afraid our recommendations would be an uphill battle to
                  implement but it
                  > > appears they are willing and actually making the changes! This
                  is such
                  > > good news, what happened to Andrew should nerve happen again to
                  another
                  > > child. This is what we wanted.
                  > > In addition he said there are 10 other "invasive" procedures
                  that are
                  > > treatd int he same manner and wants tor evamp all of those as
                  well.
                  > >
                  > > A big burden has been lifted. once the forms are complete, I
                  will post
                  > to
                  > > the G tube list to inform others and maybe they can take the
                  forms to
                  > their
                  > > GI's and hospitals as well.
                  > >
                  > > Thanks for listening!
                  > >
                  > > I do have an evil side of me, for about 10 minutes last night, I
                  was
                  > > disapointed that we were not going to SUE them for failing to
                  diagnose,
                  > > which was our last resort if they refused to implement any of our
                  > > reccomended changes, but i am past that now as the reason to sue
                  was to
                  > > make changes and we can accomplish that without a painful
                  lawsuit.
                  > >
                  > > Sherry Bishop
                  > > Mother to Angel Andrew - 6-10-97 11-24-98
                  > > GERD, G-Tube, Hypotonia, Hydrocephalus, Visually & Hearing
                  impaired,
                  > > scoliosis, undiagnosed genetic syndrome, and who has the most
                  pleasant
                  > > disposition.
                  > >
                  > >
                  > > -----------------------------------------------------------------
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