Guest guest Posted May 1, 2007 Report Share Posted May 1, 2007 We have had a 2 night sleep over carer for an assessment for Social Crappy Services and she said how on earth do we sleep, my reply was we dont! but thank god they have now seen what a typical night here is like, and little Fleur wakes at 7am so its not like anyone can catch up later on sleep. A typical night Amelie will alarm over 20 to 30 times and when you get to her her stas monitor says shes low 50's and still dropping with cyanosed mouth and you cant hear her and usually she so noisy breathing. I have a new electric bed for her, and we have explored all positions, prone seems better, but she refuses to stay there!! I am constantly fighting with Social Services and have just written to Parliament (Government) over a dispute with my Direct Payments. Social Services are now doing a report combined with the community nurses on how many nights we can have (2 - 3 have been suggested) The carer who sat with Amelie for the 2 nights said Amelie is by far the worse child for alarming that they have on the books at this present time, and shes been into them all. Its all about money and whos paying for it, they want me to give back my direct payments if they put some nights in which leaves Darren with zero help during the day and 4 kids whilst I am at University and I am having none of it...so its a battle of wills as usual. We were so relieved to have Amelie home initially that we got on with the no sleep, we thought it was charge and its meant to be, but its been a long year and we are both knackered and in the middle age bracket...I look like crap most days!! My only hope is the tonsils and adenoids we dont see them until June!! In the meantime maybe Social Services will come to their senses!! cheers Les x > > Hi Lesley- > > I know you know that it's not right that she be left in these > circumstances, > and that you are forced to maintain overnight vigil---- > It's time for you to get way tee'd off again and let somebody have it > right > between the_____(you choose). > How many times is she alarming, or desatting overnight? > Sometimes you have to tell them they are going to have to put her back in > the hospital if they cannot provide some immediate help. > Not only is she at life-threatening risk-but so are you-(play it up) > Obviously you should have an overnight nurse at bedside to moniter her. > I believe there are alarm pads-some sort of shaky thing that's supposed to > rouse the sleeper so that they breathe, but as deeply as she sleeps they > aren't going to help. > Does she do any better breathing/sleeping in a semi-recliner seat so she > is more upright? > What about an oral airway? Messy tape...but who cares compared to what > you have now. I don't know if they'd hold her tongue in the right position > > either. > Does she do this while on her side as well? > Of all the floppiness in Charge, they had to throw in a floppy tongue? > Where's the justice I ask you. > I'm going to go google, so if I don't have this right, pls let me know. > in Ma. > > ************************************** See what's free at > http://www.aol.com. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2007 Report Share Posted May 1, 2007 Hey and Les! Les-Sorry to hear about Amelie's problems and the hard time they're trying to give you guys! I hope it works out well and quickly!! -Rasha just started back with her apnea and desatting at night too. I had to put her back on O2 when she's sleeping at night. If you shake her, she will breathe again. That's why I liked that shaker pad thing you were telling Les about. Where do you find those? Thanks! Janay > > Hi Lesley- > > I know you know that it's not right that she be left in these circumstances, > and that you are forced to maintain overnight vigil---- > It's time for you to get way tee'd off again and let somebody have it right > between the_____(you choose). > How many times is she alarming, or desatting overnight? > Sometimes you have to tell them they are going to have to put her back in > the hospital if they cannot provide some immediate help. > Not only is she at life-threatening risk-but so are you-(play it up) > Obviously you should have an overnight nurse at bedside to moniter her. > I believe there are alarm pads-some sort of shaky thing that's supposed to > rouse the sleeper so that they breathe, but as deeply as she sleeps they > aren't going to help. > Does she do any better breathing/sleeping in a semi-recliner seat so she > is more upright? > What about an oral airway? Messy tape...but who cares compared to what > you have now. I don't know if they'd hold her tongue in the right position > either. > Does she do this while on her side as well? > Of all the floppiness in Charge, they had to throw in a floppy tongue? > Where's the justice I ask you. > I'm going to go google, so if I don't have this right, pls let me know. > in Ma. > > > > ************************************** See what's free at http://www.aol.com. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2007 Report Share Posted May 1, 2007 Only time to write a quick reply but just wanted to say don't back down Les, you need both the overnight carers and the direct payments for some day time breaks for you both. Social Crappy services have to provide a service for Amelie based on NEEDS and not on their finances. So keep hounding. is (Mum to , UK) > > > > We have had a 2 night sleep over carer for an assessment for Social Crappy > Services and she said how on earth do we sleep, > my reply was we dont! but thank god they have now seen what a typical > night > here is like, and little Fleur wakes at 7am so its not like anyone can > catch > up later on sleep. > > A typical night Amelie will alarm over 20 to 30 times and when you get to > her her stas monitor says shes low 50's and still dropping with cyanosed > mouth and you cant hear her and usually she so noisy breathing. > > I have a new electric bed for her, and we have explored all positions, > prone > seems better, but she refuses to stay there!! > > I am constantly fighting with Social Services and have just written to > Parliament (Government) over a dispute with my Direct Payments. > > Social Services are now doing a report combined with the community nurses > on > how many nights we can have (2 - 3 have been suggested) The carer who sat > with Amelie for the 2 nights said Amelie is by far the worse child for > alarming that they have on the books at this present time, and shes been > into them all. > > Its all about money and whos paying for it, they want me to give back my > direct payments if they put some nights in which leaves Darren with zero > help during the day and 4 kids whilst I am at University and I am having > none of it...so its a battle of wills as usual. > > We were so relieved to have Amelie home initially that we got on with the > no > sleep, we thought it was charge and its meant to be, but its been a long > year and we are both knackered and in the middle age bracket...I look like > crap most days!! > > My only hope is the tonsils and adenoids we dont see them until June!! > In the meantime maybe Social Services will come to their senses!! > > cheers Les x > > On 30/04/07, mdlinda@... mdlinda@...> > wrote: > > > > Hi Lesley- > > > > I know you know that it's not right that she be left in these > > circumstances, > > and that you are forced to maintain overnight vigil---- > > It's time for you to get way tee'd off again and let somebody have it > > right > > between the_____(you choose). > > How many times is she alarming, or desatting overnight? > > Sometimes you have to tell them they are going to have to put her back > in > > the hospital if they cannot provide some immediate help. > > Not only is she at life-threatening risk-but so are you-(play it up) > > Obviously you should have an overnight nurse at bedside to moniter her. > > I believe there are alarm pads-some sort of shaky thing that's supposed > to > > rouse the sleeper so that they breathe, but as deeply as she sleeps they > > aren't going to help. > > Does she do any better breathing/sleeping in a semi-recliner seat so she > > is more upright? > > What about an oral airway? Messy tape...but who cares compared to what > > you have now. I don't know if they'd hold her tongue in the right > position > > > > either. > > Does she do this while on her side as well? > > Of all the floppiness in Charge, they had to throw in a floppy tongue? > > Where's the justice I ask you. > > I'm going to go google, so if I don't have this right, pls let me know. > > in Ma. > > > > ************************************** See what's free at > > http://www.aol.com. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2007 Report Share Posted May 1, 2007 Janay- They may they have those available through the IL Assistive Tech Project if you want to borrow one to try it out. Michele W _____ From: CHARGE [mailto:CHARGE ] On Behalf Of jkhayes95 Sent: Tuesday, May 01, 2007 11:29 AM To: CHARGE Subject: Re: Amelie Hey and Les! Les-Sorry to hear about Amelie's problems and the hard time they're trying to give you guys! I hope it works out well and quickly!! -Rasha just started back with her apnea and desatting at night too. I had to put her back on O2 when she's sleeping at night. If you shake her, she will breathe again. That's why I liked that shaker pad thing you were telling Les about. Where do you find those? Thanks! Janay Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2007 Report Share Posted May 1, 2007 Thanks Michele! Are you coming on Saturday? Hope to see you there. Janay > > Janay- > > They may they have those available through the IL Assistive Tech Project if > you want to borrow one to try it out. > > > > Michele W > > > > _____ > > From: CHARGE [mailto:CHARGE ] On Behalf Of > jkhayes95 > Sent: Tuesday, May 01, 2007 11:29 AM > To: CHARGE > Subject: Re: Amelie > > > > Hey and Les! > > Les-Sorry to hear about Amelie's problems and the hard time they're > trying to give you guys! I hope it works out well and quickly!! > > -Rasha just started back with her apnea and desatting at night > too. I had to put her back on O2 when she's sleeping at night. If > you shake her, she will breathe again. That's why I liked that > shaker pad thing you were telling Les about. Where do you find those? > > Thanks! > > Janay > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2007 Report Share Posted May 2, 2007 No - I am going to a meeting of the Springfield STARS. It's awfully far and expensive for me to go to Chicago and we have more important things to spend our FSN $ on - even though it would be great fun! So enjoy the celebration! I'll be thinking of you! Michele W _____ From: CHARGE [mailto:CHARGE ] On Behalf Of jkhayes95 Sent: Tuesday, May 01, 2007 10:25 PM To: CHARGE Subject: Re: Amelie Thanks Michele! Are you coming on Saturday? Hope to see you there. Janay Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2007 Report Share Posted May 3, 2007 Lesley- Crazy, crazy, crazy. I'll be praying for her resistance to all the germs floating around the hospital, for a short wait for theatre, and for quiet days and nights in the meantime. Michele W Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2007 Report Share Posted May 3, 2007 HUGS!! I hope you all can be home for good soon. Crystal and Eva > > Dear All > > A long day of absolute nonsence!! > > I waited all day to finally see the ENT consultant, he is very > experienced and one of the best in the Northwest, he agreed completely > looked in her mouth and said yes lets get them out!! yipeee he didnt > think bipap would work for Amelie and so we have agreed on surgery and > the dreaded GA word!! > > He said we could take her home and he will be in touch soon. We packed > up rapid and shot off home, half way home the mobile rang...The > respiratory consultant said > NO NO NO you can not go home please bring her back!! > > apparently last nights recording on her sats machine showed desats > down to 54, 51 and a terrible 39, they said they cant let her sleep > at home until they have dealt with the problem... so we have to take > her back tonight, and we can bring her home in the day time, not the > easiest option I have ever been given, and we dont know how long the > waiting list is for theatre!! > > Dont forget we dont pay in the UK for paeds so you are in a queue!! > > My worry now will be her catching something from the hospital which is > highly likely and this turning into a long winded stay!! > > thanks for all the messages and support > Les x > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2007 Report Share Posted May 3, 2007 hope you get a quick surgery date and all goes well!! Amelie Dear All A long day of absolute nonsence!! I waited all day to finally see the ENT consultant, he is very experienced and one of the best in the Northwest, he agreed completely looked in her mouth and said yes lets get them out!! yipeee he didnt think bipap would work for Amelie and so we have agreed on surgery and the dreaded GA word!! He said we could take her home and he will be in touch soon. We packed up rapid and shot off home, half way home the mobile rang...The respiratory consultant said NO NO NO you can not go home please bring her back!! apparently last nights recording on her sats machine showed desats down to 54, 51 and a terrible 39, they said they cant let her sleep at home until they have dealt with the problem... so we have to take her back tonight, and we can bring her home in the day time, not the easiest option I have ever been given, and we dont know how long the waiting list is for theatre!! Dont forget we dont pay in the UK for paeds so you are in a queue!! My worry now will be her catching something from the hospital which is highly likely and this turning into a long winded stay!! thanks for all the messages and support Les x Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2007 Report Share Posted May 3, 2007 hope you get a quick surgery date and all goes well!! Amelie Dear All A long day of absolute nonsence!! I waited all day to finally see the ENT consultant, he is very experienced and one of the best in the Northwest, he agreed completely looked in her mouth and said yes lets get them out!! yipeee he didnt think bipap would work for Amelie and so we have agreed on surgery and the dreaded GA word!! He said we could take her home and he will be in touch soon. We packed up rapid and shot off home, half way home the mobile rang...The respiratory consultant said NO NO NO you can not go home please bring her back!! apparently last nights recording on her sats machine showed desats down to 54, 51 and a terrible 39, they said they cant let her sleep at home until they have dealt with the problem... so we have to take her back tonight, and we can bring her home in the day time, not the easiest option I have ever been given, and we dont know how long the waiting list is for theatre!! Dont forget we dont pay in the UK for paeds so you are in a queue!! My worry now will be her catching something from the hospital which is highly likely and this turning into a long winded stay!! thanks for all the messages and support Les x Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2007 Report Share Posted May 3, 2007 hope you get a quick surgery date and all goes well!! Amelie Dear All A long day of absolute nonsence!! I waited all day to finally see the ENT consultant, he is very experienced and one of the best in the Northwest, he agreed completely looked in her mouth and said yes lets get them out!! yipeee he didnt think bipap would work for Amelie and so we have agreed on surgery and the dreaded GA word!! He said we could take her home and he will be in touch soon. We packed up rapid and shot off home, half way home the mobile rang...The respiratory consultant said NO NO NO you can not go home please bring her back!! apparently last nights recording on her sats machine showed desats down to 54, 51 and a terrible 39, they said they cant let her sleep at home until they have dealt with the problem... so we have to take her back tonight, and we can bring her home in the day time, not the easiest option I have ever been given, and we dont know how long the waiting list is for theatre!! Dont forget we dont pay in the UK for paeds so you are in a queue!! My worry now will be her catching something from the hospital which is highly likely and this turning into a long winded stay!! thanks for all the messages and support Les x Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2007 Report Share Posted May 3, 2007 Les, Poor old Amelie and poor old you all. The only slight consolation I can offer is that if she is in hospital, she is more likely to be prioritised. No doubt the two consultants are more likely to fall out and reach a quicker agreement for surgery given that she is (a) obviously desating ridiculously and ( occupying a respiratory hospital bed with nothing respiratory can do to change that. Let's hope this is the case so Amelie can be sorted quickly. This surgery is short and sweet, GA not withstanding. Everything crossed for quick resolution. Cheers and best of luck....... Flo > > Dear All > > A long day of absolute nonsence!! > > I waited all day to finally see the ENT consultant, he is very > experienced and one of the best in the Northwest, he agreed completely > looked in her mouth and said yes lets get them out!! yipeee he didnt > think bipap would work for Amelie and so we have agreed on surgery and > the dreaded GA word!! > > He said we could take her home and he will be in touch soon. We packed > up rapid and shot off home, half way home the mobile rang...The > respiratory consultant said > NO NO NO you can not go home please bring her back!! > > apparently last nights recording on her sats machine showed desats > down to 54, 51 and a terrible 39, they said they cant let her sleep > at home until they have dealt with the problem... so we have to take > her back tonight, and we can bring her home in the day time, not the > easiest option I have ever been given, and we dont know how long the > waiting list is for theatre!! > > Dont forget we dont pay in the UK for paeds so you are in a queue!! > > My worry now will be her catching something from the hospital which is > highly likely and this turning into a long winded stay!! > > thanks for all the messages and support > Les x > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2007 Report Share Posted May 3, 2007 Les, Poor old Amelie and poor old you all. The only slight consolation I can offer is that if she is in hospital, she is more likely to be prioritised. No doubt the two consultants are more likely to fall out and reach a quicker agreement for surgery given that she is (a) obviously desating ridiculously and ( occupying a respiratory hospital bed with nothing respiratory can do to change that. Let's hope this is the case so Amelie can be sorted quickly. This surgery is short and sweet, GA not withstanding. Everything crossed for quick resolution. Cheers and best of luck....... Flo > > Dear All > > A long day of absolute nonsence!! > > I waited all day to finally see the ENT consultant, he is very > experienced and one of the best in the Northwest, he agreed completely > looked in her mouth and said yes lets get them out!! yipeee he didnt > think bipap would work for Amelie and so we have agreed on surgery and > the dreaded GA word!! > > He said we could take her home and he will be in touch soon. We packed > up rapid and shot off home, half way home the mobile rang...The > respiratory consultant said > NO NO NO you can not go home please bring her back!! > > apparently last nights recording on her sats machine showed desats > down to 54, 51 and a terrible 39, they said they cant let her sleep > at home until they have dealt with the problem... so we have to take > her back tonight, and we can bring her home in the day time, not the > easiest option I have ever been given, and we dont know how long the > waiting list is for theatre!! > > Dont forget we dont pay in the UK for paeds so you are in a queue!! > > My worry now will be her catching something from the hospital which is > highly likely and this turning into a long winded stay!! > > thanks for all the messages and support > Les x > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2007 Report Share Posted May 3, 2007 Les, Poor old Amelie and poor old you all. The only slight consolation I can offer is that if she is in hospital, she is more likely to be prioritised. No doubt the two consultants are more likely to fall out and reach a quicker agreement for surgery given that she is (a) obviously desating ridiculously and ( occupying a respiratory hospital bed with nothing respiratory can do to change that. Let's hope this is the case so Amelie can be sorted quickly. This surgery is short and sweet, GA not withstanding. Everything crossed for quick resolution. Cheers and best of luck....... Flo > > Dear All > > A long day of absolute nonsence!! > > I waited all day to finally see the ENT consultant, he is very > experienced and one of the best in the Northwest, he agreed completely > looked in her mouth and said yes lets get them out!! yipeee he didnt > think bipap would work for Amelie and so we have agreed on surgery and > the dreaded GA word!! > > He said we could take her home and he will be in touch soon. We packed > up rapid and shot off home, half way home the mobile rang...The > respiratory consultant said > NO NO NO you can not go home please bring her back!! > > apparently last nights recording on her sats machine showed desats > down to 54, 51 and a terrible 39, they said they cant let her sleep > at home until they have dealt with the problem... so we have to take > her back tonight, and we can bring her home in the day time, not the > easiest option I have ever been given, and we dont know how long the > waiting list is for theatre!! > > Dont forget we dont pay in the UK for paeds so you are in a queue!! > > My worry now will be her catching something from the hospital which is > highly likely and this turning into a long winded stay!! > > thanks for all the messages and support > Les x > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2007 Report Share Posted May 4, 2007 some drs they say u can go home then others say no do the ent no that the other wotn let her go > > Les, > Poor old Amelie and poor old you all. The only slight consolation I can > offer is that if she is in hospital, she is more likely to be prioritised. > No doubt the two consultants are more likely to fall out and reach a > quicker > agreement for surgery given that she is (a) obviously desating > ridiculously > and ( occupying a respiratory hospital bed with nothing respiratory can > do > to change that. Let's hope this is the case so Amelie can be sorted > quickly. > > This surgery is short and sweet, GA not withstanding. Everything crossed > for quick resolution. > > Cheers and best of luck....... > Flo > > On 03/05/07, Amelie Chan amelie.m.chan@...> > wrote: > > > > Dear All > > > > A long day of absolute nonsence!! > > > > I waited all day to finally see the ENT consultant, he is very > > experienced and one of the best in the Northwest, he agreed completely > > looked in her mouth and said yes lets get them out!! yipeee he didnt > > think bipap would work for Amelie and so we have agreed on surgery and > > the dreaded GA word!! > > > > He said we could take her home and he will be in touch soon. We packed > > up rapid and shot off home, half way home the mobile rang...The > > respiratory consultant said > > NO NO NO you can not go home please bring her back!! > > > > apparently last nights recording on her sats machine showed desats > > down to 54, 51 and a terrible 39, they said they cant let her sleep > > at home until they have dealt with the problem... so we have to take > > her back tonight, and we can bring her home in the day time, not the > > easiest option I have ever been given, and we dont know how long the > > waiting list is for theatre!! > > > > Dont forget we dont pay in the UK for paeds so you are in a queue!! > > > > My worry now will be her catching something from the hospital which is > > highly likely and this turning into a long winded stay!! > > > > thanks for all the messages and support > > Les x > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2007 Report Share Posted May 4, 2007 Yes Ellen this morning the respiratory have left a message for the ENT Amelie has a surgery date for 21st May, providing there is an ICU bed free, however, the respiratory consultant said this morning she is trying her best to bring it forwards as they are responsible for not letting her home! hopefully poroviding the ENT is not on holiday then he will bring it forwards for her. hugs Les x > > some drs they say u can go home then others say no do the ent no that > the > other wotn let her go > > On 04/05/07, Flo Njeru flo.njeru@...> > wrote: > > > > Les, > > Poor old Amelie and poor old you all. The only slight consolation I can > > offer is that if she is in hospital, she is more likely to be > prioritised. > > No doubt the two consultants are more likely to fall out and reach a > > quicker > > agreement for surgery given that she is (a) obviously desating > > ridiculously > > and ( occupying a respiratory hospital bed with nothing respiratory > can > > do > > to change that. Let's hope this is the case so Amelie can be sorted > > quickly. > > > > This surgery is short and sweet, GA not withstanding. Everything crossed > > for quick resolution. > > > > Cheers and best of luck....... > > Flo > > > > On 03/05/07, Amelie Chan amelie.m.chan@... > > > > wrote: > > > > > > Dear All > > > > > > A long day of absolute nonsence!! > > > > > > I waited all day to finally see the ENT consultant, he is very > > > experienced and one of the best in the Northwest, he agreed completely > > > looked in her mouth and said yes lets get them out!! yipeee he didnt > > > think bipap would work for Amelie and so we have agreed on surgery and > > > the dreaded GA word!! > > > > > > He said we could take her home and he will be in touch soon. We packed > > > up rapid and shot off home, half way home the mobile rang...The > > > respiratory consultant said > > > NO NO NO you can not go home please bring her back!! > > > > > > apparently last nights recording on her sats machine showed desats > > > down to 54, 51 and a terrible 39, they said they cant let her sleep > > > at home until they have dealt with the problem... so we have to take > > > her back tonight, and we can bring her home in the day time, not the > > > easiest option I have ever been given, and we dont know how long the > > > waiting list is for theatre!! > > > > > > Dont forget we dont pay in the UK for paeds so you are in a queue!! > > > > > > My worry now will be her catching something from the hospital which is > > > highly likely and this turning into a long winded stay!! > > > > > > thanks for all the messages and support > > > Les x > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2007 Report Share Posted May 4, 2007 lets hope they do but id never count on drs never have LOL y just tues my endo cancled on my and never said anything > > Yes Ellen this morning the respiratory have left a message for the ENT > Amelie has a surgery date for 21st May, providing there is an ICU bed > free, > however, the respiratory consultant said this morning she is trying her > best > to bring it forwards as they are responsible for not letting her home! > > hopefully poroviding the ENT is not on holiday then he will bring it > forwards for her. > > hugs Les x > > On 04/05/07, ellen howe ellen.howe@... > > wrote: > > > > some drs they say u can go home then others say no do the ent no that > > the > > other wotn let her go > > > > On 04/05/07, Flo Njeru flo.njeru@... > > > > wrote: > > > > > > Les, > > > Poor old Amelie and poor old you all. The only slight consolation I > can > > > offer is that if she is in hospital, she is more likely to be > > prioritised. > > > No doubt the two consultants are more likely to fall out and reach a > > > quicker > > > agreement for surgery given that she is (a) obviously desating > > > ridiculously > > > and ( occupying a respiratory hospital bed with nothing respiratory > > can > > > do > > > to change that. Let's hope this is the case so Amelie can be sorted > > > quickly. > > > > > > This surgery is short and sweet, GA not withstanding. Everything > crossed > > > for quick resolution. > > > > > > Cheers and best of luck....... > > > Flo > > > > > > On 03/05/07, Amelie Chan amelie.m.chan@... > > > > > > > wrote: > > > > > > > > Dear All > > > > > > > > A long day of absolute nonsence!! > > > > > > > > I waited all day to finally see the ENT consultant, he is very > > > > experienced and one of the best in the Northwest, he agreed > completely > > > > looked in her mouth and said yes lets get them out!! yipeee he didnt > > > > think bipap would work for Amelie and so we have agreed on surgery > and > > > > the dreaded GA word!! > > > > > > > > He said we could take her home and he will be in touch soon. We > packed > > > > up rapid and shot off home, half way home the mobile rang...The > > > > respiratory consultant said > > > > NO NO NO you can not go home please bring her back!! > > > > > > > > apparently last nights recording on her sats machine showed desats > > > > down to 54, 51 and a terrible 39, they said they cant let her sleep > > > > at home until they have dealt with the problem... so we have to take > > > > her back tonight, and we can bring her home in the day time, not the > > > > easiest option I have ever been given, and we dont know how long the > > > > waiting list is for theatre!! > > > > > > > > Dont forget we dont pay in the UK for paeds so you are in a queue!! > > > > > > > > My worry now will be her catching something from the hospital which > is > > > > highly likely and this turning into a long winded stay!! > > > > > > > > thanks for all the messages and support > > > > Les x > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2007 Report Share Posted June 7, 2007 Les- Yes, you are bound to be depressed. Yes, there are perfectly good reasons to be grumpy. But – counseling can still help. It can give you a safe place to vent, a place to work through and come to peace with those feelings, and a way to release it all so that you can find your joy again in the midst of hospitalizations or anything else that comes your way. Especially if it is free at the hospital – and easy to access cuz you’re there anyway – take it. Hugs- Michele W Aubrie’s mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2007 Report Share Posted June 7, 2007 Les, I'm thinking of you through this difficult time. Cyber hugs to help get you through it all! , mommy to Meagan (CHaRgE) and 2 1/2 year old twins, and big brother 5 this month, married to the best daddy in the world for 10 years! The mention of my child's name might make me cry. Not mentioning my child's name will break my heart. Unknown Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2007 Report Share Posted June 7, 2007 Agree with Michele Les. If it is there, take it up. It may not change anything for Amelie but it will give you the space to work through some of the emotions you are probably holding onto (we all do it), and why wouldn't you? Your child is unwell, you are still responsible for the other 3, your lives are upside down, you are trying to juggle several commitments in one go, you have 2 years worth of grief and joy......... If I were you, I would go down the " try anything once " line. You never know, it might just help clear your head a little. If I was offered this now, I would jump at the chance even if all I do is grouch at the counsellor! Hope tomorrow's move goes as OK as possible for unknown territories. Thinking of you all....... Flo > > Les- > > Yes, you are bound to be depressed. Yes, there are perfectly good reasons > to be grumpy. But – counseling can still help. It can give you a safe > place to vent, a place to work through and come to peace with those > feelings, and a way to release it all so that you can find your joy again > in > the midst of hospitalizations or anything else that comes your way. > Especially if it is free at the hospital – and easy to access cuz you're > there anyway – take it. > > Hugs- > > Michele W > Aubrie's mom > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2007 Report Share Posted June 7, 2007 Wise words of wisdom Flo greatly appreciated...feeling sorry for myself and a little weepy, time out from Uni is necessary to recharge, take stock and get on with it! love Les x > > Agree with Michele Les. If it is there, take it up. It may not change > anything for Amelie but it will give you the space to work through some of > the emotions you are probably holding onto (we all do it), and why > wouldn't > you? Your child is unwell, you are still responsible for the other 3, > your > lives are upside down, you are trying to juggle several commitments in one > go, you have 2 years worth of grief and joy......... If I were you, I > would > go down the " try anything once " line. You never know, it might just help > clear your head a little. If I was offered this now, I would jump at the > chance even if all I do is grouch at the counsellor! > > Hope tomorrow's move goes as OK as possible for unknown territories. > > Thinking of you all....... > Flo > > > > > > Les- > > > > Yes, you are bound to be depressed. Yes, there are perfectly good > reasons > > to be grumpy. But – counseling can still help. It can give you a safe > > place to vent, a place to work through and come to peace with those > > feelings, and a way to release it all so that you can find your joy > again > > in > > the midst of hospitalizations or anything else that comes your way. > > Especially if it is free at the hospital – and easy to access cuz you're > > there anyway – take it. > > > > Hugs- > > > > Michele W > > Aubrie's mom > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2007 Report Share Posted June 7, 2007 ditto from this part of the world. Right now, Les, it seems you need to get a little from others to help you get back on track. You have every right to be feeling sorry for yourself--you are taking care of so many people and your dear angel's " stuff " takes up a lot of emotional, physical, and psychic energy. You deserve a place for grouching, crying, etc. thinking of you. pam Re: Amélie Wise words of wisdom Flo greatly appreciated...feeling sorry for myself and a little weepy, time out from Uni is necessary to recharge, take stock and get on with it! love Les x > > Agree with Michele Les. If it is there, take it up. It may not change > anything for Amelie but it will give you the space to work through some of > the emotions you are probably holding onto (we all do it), and why > wouldn't > you? Your child is unwell, you are still responsible for the other 3, > your > lives are upside down, you are trying to juggle several commitments in one > go, you have 2 years worth of grief and joy......... If I were you, I > would > go down the " try anything once " line. You never know, it might just help > clear your head a little. If I was offered this now, I would jump at the > chance even if all I do is grouch at the counsellor! > > Hope tomorrow's move goes as OK as possible for unknown territories. > > Thinking of you all....... > Flo > > > > > > Les- > > > > Yes, you are bound to be depressed. Yes, there are perfectly good > reasons > > to be grumpy. But - counseling can still help. It can give you a safe > > place to vent, a place to work through and come to peace with those > > feelings, and a way to release it all so that you can find your joy > again > > in > > the midst of hospitalizations or anything else that comes your way. > > Especially if it is free at the hospital - and easy to access cuz you're > > there anyway - take it. > > > > Hugs- > > > > Michele W > > Aubrie's mom > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2007 Report Share Posted June 7, 2007 My thoughts exactly! Janay > > > > > > Les- > > > > > > Yes, you are bound to be depressed. Yes, there are perfectly good > > reasons > > > to be grumpy. But - counseling can still help. It can give you a safe > > > place to vent, a place to work through and come to peace with those > > > feelings, and a way to release it all so that you can find your joy > > again > > > in > > > the midst of hospitalizations or anything else that comes your way. > > > Especially if it is free at the hospital - and easy to access cuz you're > > > there anyway - take it. > > > > > > Hugs- > > > > > > Michele W > > > Aubrie's mom > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2007 Report Share Posted June 9, 2007 Hi Les, Good for you for recognising the need to take time out and recharge. If you fancy a chat with someone who fully understands and walks the walk with you, I am here all day tomorrow (Sunday) and on " study leave " all day Monday (except of course 2.45 to 4pm when I am on school run). We have not chatted for a while and it would be a pleasure to chat with you so please do feel free to ring me. So how did the move to the new hospital go? You are all fully in my thoughts and all crossable things crossed for you. Hugs from Catford.......... Flo > > Wise words of wisdom Flo greatly appreciated...feeling sorry for myself > and > a little weepy, > time out from Uni is necessary to recharge, take stock and get on with it! > love Les x > > > > > > > Agree with Michele Les. If it is there, take it up. It may not change > > anything for Amelie but it will give you the space to work through some > of > > the emotions you are probably holding onto (we all do it), and why > > wouldn't > > you? Your child is unwell, you are still responsible for the other 3, > > your > > lives are upside down, you are trying to juggle several commitments in > one > > go, you have 2 years worth of grief and joy......... If I were you, I > > would > > go down the " try anything once " line. You never know, it might just > help > > clear your head a little. If I was offered this now, I would jump at > the > > chance even if all I do is grouch at the counsellor! > > > > Hope tomorrow's move goes as OK as possible for unknown territories. > > > > Thinking of you all....... > > Flo > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2007 Report Share Posted June 11, 2007 Flo I missed this message until 23.23 this evening I am back on shifts and wont finish until 23.00 Tuesday night. I will catch up with you soon!! probably the next UK family get to gether!! the way its going !! Amélie has caught a nasty bug...although no-one has confirmed what all her samples have gone, diarrhoea, trying to vomit and spiked temp constantly over 38 three hospital in one week it was inevitable!! The BIPAP is not going well!! She either wakes and yanks it off rather fiestally and also her sats were worse when she was on it!! which doesnt make sense, I think her major problem will be her secretions and difficulty bringing them up with the pressure wafting down her airway. Next multi disc meeting 20th June for the outcome on whats going to happen. hugs Les x > > Hi Les, > Good for you for recognising the need to take time out and recharge. If > you > fancy a chat with someone who fully understands and walks the walk with > you, > I am here all day tomorrow (Sunday) and on " study leave " all day Monday > (except of course 2.45 to 4pm when I am on school run). We have not > chatted > for a while and it would be a pleasure to chat with you so please do feel > free to ring me. > > So how did the move to the new hospital go? > > You are all fully in my thoughts and all crossable things crossed for you. > > Hugs from Catford.......... > Flo > > On 08/06/07, Amelie Chan amelie.m.chan@...> > wrote: > > > > Wise words of wisdom Flo greatly appreciated...feeling sorry for myself > > and > > a little weepy, > > time out from Uni is necessary to recharge, take stock and get on with > it! > > love Les x > > > > > > On 07/06/07, Flo Njeru flo.njeru@...> > wrote: > > > > > > Agree with Michele Les. If it is there, take it up. It may not change > > > anything for Amelie but it will give you the space to work through > some > > of > > > the emotions you are probably holding onto (we all do it), and why > > > wouldn't > > > you? Your child is unwell, you are still responsible for the other 3, > > > your > > > lives are upside down, you are trying to juggle several commitments in > > one > > > go, you have 2 years worth of grief and joy......... If I were you, I > > > would > > > go down the " try anything once " line. You never know, it might just > > help > > > clear your head a little. If I was offered this now, I would jump at > > the > > > chance even if all I do is grouch at the counsellor! > > > > > > Hope tomorrow's move goes as OK as possible for unknown territories. > > > > > > Thinking of you all....... > > > Flo > > > > > > Quote Link to comment Share on other sites More sharing options...
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