Guest guest Posted January 4, 2006 Report Share Posted January 4, 2006 Lesley- Thanks for the update. I hope the news gets better. Keep your mother lion claws and teeth showing until those folks get with the program! Michele W Aubrie's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2006 Report Share Posted January 4, 2006 hugs being sent and you have every right to be cross!! Amelie, what a day! > Dear All > > I will try to explain , because i am sure overseas you will have > different hospitals and things, so its like this, > > 1 first day back from New Year > 2 everyone appreared to be either depressed or hungover not sure which > 3 TPN ECHO and ECG, CT SCAN all ordered none were done! > 4 got there today cross, very cross, not usually me, I know if Simon > or Flo were on they must have had days like these in the NHS > > Although Amelie is still crying she is not as bad I have to say at one > point I thought we saw a shimmer of a smile cant be certain but it > could have been. > > I went in and let rip, why this not done, and so on? so today the NHS > has finally got cracking, CT scan done will get report tomorrow, but > we were told the left lung is as bad as they thought, they were > looking for a blockage and apparently if there were a blockage she > would have gone straight to theatre, so we are not too worried here, > > in the meantime we missed the cardio team( wouldnt you think they > would liaise with each other they are two mins from each other on the > corridor), so they rang to ask her to come back because they have lost > the ecg 24 monitor print out from the 28th December, so no one knew > the results, and with the bradys they want to know whats going on,so > they were to repeat this but she said no too late!! will try tomorrow, > bloody marvellous!! > In the meantime she has had to episodes of de sats down to 49 and 51 > blue lips etc all rather worrying heart rate low 60' s although she > did have chloral for CT scan maybe this is why, also blood pressure > low 44 not sure what it should be in cardiac child but she is usually > 65 to 80, so after the second desat we said we wanted to see a doctor, > she came looked her over never seen her before, and she had another de > sat in front of her, good girl amelie she usually looks too good when > you call someone out, anyway she said to keep a close watch and she > will page a registra, at this point we had to leave to pick kids up > for bed! so Darren will go back to check all is ok, because now my > hearts in my mouth. > > They think she definately aspirated on news years day and her meds are > probably coming up as well, so this could explain stuff. FRIDAY will > be decision day on what kind of surgery we will push to re do nissen > rather than dissociation its very invasive, according to a few. > > After not having food only fluids since saturday she has lost weight > she now weighs 8.6kg she was over 10kg in November, at last as we were > leaving the TPN showed up it was order yesterday!! only to discover > the central line was out in her nappie blood everywhere, I thought oh > my lord shes never going to get fed, panic over it can go peripheral, > so at last tonight she will get some. > > Thats it think I remembered it all > > Any news from Simon or Flo if your there let us know how is. > > Bye for now > Lesley x > > > > > > > > Membership of this email support groups does not constitute membership in > the CHARGE Syndrome Foundation or CHARGE Syndrome Canada. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter), > please contact marion@... or visit > the web site at http://www.chargesyndrome.org - for CHARGE Syndrome Canada > information and membership, please visit http://www.chargesyndrome.ca or > email info@... . > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available at > www.chargesyndrome.org or by calling 1-. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2006 Report Share Posted January 4, 2006 Hi Lesley, What a day....my thought exactly when I read your email. I know what you mean about the post Christmas apathy. Likewise, at my workplace everyone is a bit jaded, not really back in the swing of work yet after the holidays, but as we are just an office it doesn't matter, when you work in a hospital you need to " get with the program " a bit quicker as people are really counting on you. So I hope by tomorrow the doctors and nurses wake up and start doing what they are supposed to be doing for Amelie. I think you were right to go in and let rip. I always hesitate to complain incase I annoy people and somehow " make things worse " for , but then every now and then you have to get all heavy with the NHS if you are going to get what you need. I just remind myself they we are paying their wages with our taxes and so they need to start listening to me! So well done, keep on at them and I hope you get some answers soon on what they plan to do next as all the uncertainity has been going on far to long for any Mum's nerves to tolerate. You are so strong. Thinking of you everyday and hoping for good news.... is (Mum to , UK) > > Dear All > > I will try to explain , because i am sure overseas you will have > different hospitals and things, so its like this, > > 1 first day back from New Year > 2 everyone appreared to be either depressed or hungover not sure which > 3 TPN ECHO and ECG, CT SCAN all ordered none were done! > 4 got there today cross, very cross, not usually me, I know if Simon > or Flo were on they must have had days like these in the NHS > > Although Amelie is still crying she is not as bad I have to say at one > point I thought we saw a shimmer of a smile cant be certain but it > could have been. > > I went in and let rip, why this not done, and so on? so today the NHS > has finally got cracking, CT scan done will get report tomorrow, but > we were told the left lung is as bad as they thought, they were > looking for a blockage and apparently if there were a blockage she > would have gone straight to theatre, so we are not too worried here, > > in the meantime we missed the cardio team( wouldnt you think they > would liaise with each other they are two mins from each other on the > corridor), so they rang to ask her to come back because they have lost > the ecg 24 monitor print out from the 28th December, so no one knew > the results, and with the bradys they want to know whats going on,so > they were to repeat this but she said no too late!! will try tomorrow, > bloody marvellous!! > In the meantime she has had to episodes of de sats down to 49 and 51 > blue lips etc all rather worrying heart rate low 60' s although she > did have chloral for CT scan maybe this is why, also blood pressure > low 44 not sure what it should be in cardiac child but she is usually > 65 to 80, so after the second desat we said we wanted to see a doctor, > she came looked her over never seen her before, and she had another de > sat in front of her, good girl amelie she usually looks too good when > you call someone out, anyway she said to keep a close watch and she > will page a registra, at this point we had to leave to pick kids up > for bed! so Darren will go back to check all is ok, because now my > hearts in my mouth. > > They think she definately aspirated on news years day and her meds are > probably coming up as well, so this could explain stuff. FRIDAY will > be decision day on what kind of surgery we will push to re do nissen > rather than dissociation its very invasive, according to a few. > > After not having food only fluids since saturday she has lost weight > she now weighs 8.6kg she was over 10kg in November, at last as we were > leaving the TPN showed up it was order yesterday!! only to discover > the central line was out in her nappie blood everywhere, I thought oh > my lord shes never going to get fed, panic over it can go peripheral, > so at last tonight she will get some. > > Thats it think I remembered it all > > Any news from Simon or Flo if your there let us know how is. > > Bye for now > Lesley x > > > > > > > > Membership of this email support groups does not constitute membership in > the CHARGE Syndrome Foundation or CHARGE Syndrome Canada. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter), > please contact marion@... or visit > the web site at http://www.chargesyndrome.org - for CHARGE Syndrome Canada > information and membership, please visit http://www.chargesyndrome.ca or > email info@... . > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available at > www.chargesyndrome.org or by calling 1-. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2006 Report Share Posted January 4, 2006 > > Lesley- > Thanks for the update. I hope the news gets better. Keep your mother lion > claws and teeth showing until those folks get with the program! > > Michele W > Aubrie's mom Michele, couldnt have said it better if I tried, thats exactly how it gets you, grinds you down and either you come up fighting or you shrink! I'm fighting for my Amelie for sure! Love Lesley > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2006 Report Share Posted January 4, 2006 Lesley, Sorry to hear about all the hospital woes; we've been there and done that and it's HORRID. Please give her a hug & kiss from us. Thank you for keeping us updated, we wonder about her so often. Weir Home: lisaweir@... Work: lisa.weir@... Phone: Web: http://ca.geocities.com/weirfamilyrogers Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2006 Report Share Posted January 4, 2006 > > Lesley, > Sorry to hear about all the hospital woes; we've been there and done that and it's HORRID. Please give her a hug & kiss from us. > Thank you for keeping us updated, we wonder about her so often. > > > > Weir > Home: lisaweir@r... > Work: lisa.weir@n... > Phone: > Web: http://ca.geocities.com/weirfamily@r... Dear Thanks so much for that, I know I have probably said this a few times know, but thank god I made contact with you when I did, to be introduced to this wonderful charge family I feel so priviliged to have acquired. hugs, especially Kennedy. Love Lesley > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2006 Report Share Posted January 5, 2006 how stupid weve gave a million doctors a piece of our minds and they all listen well none of them go drinking all myones knwo when i need them i really do and come running maybe thats just me and aus lol hugs ellen > > > > > > Lesley, > > Sorry to hear about all the hospital woes; we've been there and > done that and it's HORRID. Please give her a hug & kiss from us. > > Thank you for keeping us updated, we wonder about her so often. > > > > > > > > Weir > > Home: lisaweir@r... > > Work: lisa.weir@n... > > Phone: > > Web: http://ca.geocities.com/weirfamily@r... > > Dear > > Thanks so much for that, I know I have probably said this a few > times know, but thank god I made contact with you when I did, to be > introduced to this wonderful charge family I feel so priviliged to > have acquired. > > hugs, especially Kennedy. > Love Lesley > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2006 Report Share Posted January 5, 2006 How long until her central line was discovered to be out? Oh my that is terrifying! Do they plan to put in another? This is just way too much and you have every right to be fed up and to raise a ruckus. Kim L > Dear All > > I will try to explain , because i am sure overseas you will have > different hospitals and things, so its like this, > > 1 first day back from New Year > 2 everyone appreared to be either depressed or hungover not sure which > 3 TPN ECHO and ECG, CT SCAN all ordered none were done! > 4 got there today cross, very cross, not usually me, I know if Simon > or Flo were on they must have had days like these in the NHS > > Although Amelie is still crying she is not as bad I have to say at one > point I thought we saw a shimmer of a smile cant be certain but it > could have been. > > I went in and let rip, why this not done, and so on? so today the NHS > has finally got cracking, CT scan done will get report tomorrow, but > we were told the left lung is as bad as they thought, they were > looking for a blockage and apparently if there were a blockage she > would have gone straight to theatre, so we are not too worried here, > > in the meantime we missed the cardio team( wouldnt you think they > would liaise with each other they are two mins from each other on the > corridor), so they rang to ask her to come back because they have lost > the ecg 24 monitor print out from the 28th December, so no one knew > the results, and with the bradys they want to know whats going on,so > they were to repeat this but she said no too late!! will try tomorrow, > bloody marvellous!! > In the meantime she has had to episodes of de sats down to 49 and 51 > blue lips etc all rather worrying heart rate low 60' s although she > did have chloral for CT scan maybe this is why, also blood pressure > low 44 not sure what it should be in cardiac child but she is usually > 65 to 80, so after the second desat we said we wanted to see a doctor, > she came looked her over never seen her before, and she had another de > sat in front of her, good girl amelie she usually looks too good when > you call someone out, anyway she said to keep a close watch and she > will page a registra, at this point we had to leave to pick kids up > for bed! so Darren will go back to check all is ok, because now my > hearts in my mouth. > > They think she definately aspirated on news years day and her meds are > probably coming up as well, so this could explain stuff. FRIDAY will > be decision day on what kind of surgery we will push to re do nissen > rather than dissociation its very invasive, according to a few. > > After not having food only fluids since saturday she has lost weight > she now weighs 8.6kg she was over 10kg in November, at last as we were > leaving the TPN showed up it was order yesterday!! only to discover > the central line was out in her nappie blood everywhere, I thought oh > my lord shes never going to get fed, panic over it can go peripheral, > so at last tonight she will get some. > > Thats it think I remembered it all > > Any news from Simon or Flo if your there let us know how is. > > Bye for now > Lesley x > > > > > > > > Membership of this email support groups does not constitute membership in the > CHARGE Syndrome Foundation or CHARGE Syndrome Canada. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter), > please contact marion@... or visit > the web site at http://www.chargesyndrome.org - for CHARGE Syndrome Canada > information and membership, please visit http://www.chargesyndrome.ca or email > info@... . > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available at > www.chargesyndrome.org or by calling 1-. > Quote Link to comment Share on other sites More sharing options...
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