Guest guest Posted November 21, 2006 Report Share Posted November 21, 2006 --- So I had an emotional breakdown right in the middle of the hallway. And now they're not discussing discharge again until Monday. As if all of life will have changed by then. I want them to keep him in. They act like all of life will fall apart if they do. > > The ever exhausted Ami Fox the whiney mom to - 8 yrs Emma - 12 yrs - Migraines, otherwise healthy > stepmom to - 13 yrs - ADD, RAD You go girl be as whiney as you want. It was good in a way that you choose within the hospital to have an emotional breakdown for them to realise that we parents do have breaking points. I wish I could rush over and give you lots of hugs and physical support rather than just tapping on a keyboard half a world away. Best wishes to you all and I do hope things get better soon. at the bottom of the world in New Zealand. (I didn't know got to go to Hawaii) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2006 Report Share Posted November 21, 2006 --- So I had an emotional breakdown right in the middle of the hallway. And now they're not discussing discharge again until Monday. As if all of life will have changed by then. I want them to keep him in. They act like all of life will fall apart if they do. > > The ever exhausted Ami Fox the whiney mom to - 8 yrs Emma - 12 yrs - Migraines, otherwise healthy > stepmom to - 13 yrs - ADD, RAD You go girl be as whiney as you want. It was good in a way that you choose within the hospital to have an emotional breakdown for them to realise that we parents do have breaking points. I wish I could rush over and give you lots of hugs and physical support rather than just tapping on a keyboard half a world away. Best wishes to you all and I do hope things get better soon. at the bottom of the world in New Zealand. (I didn't know got to go to Hawaii) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2006 Report Share Posted November 21, 2006 --- So I had an emotional breakdown right in the middle of the hallway. And now they're not discussing discharge again until Monday. As if all of life will have changed by then. I want them to keep him in. They act like all of life will fall apart if they do. > > The ever exhausted Ami Fox the whiney mom to - 8 yrs Emma - 12 yrs - Migraines, otherwise healthy > stepmom to - 13 yrs - ADD, RAD You go girl be as whiney as you want. It was good in a way that you choose within the hospital to have an emotional breakdown for them to realise that we parents do have breaking points. I wish I could rush over and give you lots of hugs and physical support rather than just tapping on a keyboard half a world away. Best wishes to you all and I do hope things get better soon. at the bottom of the world in New Zealand. (I didn't know got to go to Hawaii) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2006 Report Share Posted November 21, 2006 Well, tapping away DOES help. That reminder that there are those of you out there (like, this entire group) who understands what I'm saying. And, yes, went to Hawaii. Apparently that was what Noah wanted for his Make-a-Wish, but at the time they didn't do that in PA. So 's mother set up the trip, instead. Once it was all arranged and paid for, suddenly Make-a-Wish said they could, but it was all taken care of already. So then he said he wants to go I-forget-where (somewhere out of the country) and they don't do that, so he has to come up with something else. LoL. Hawaii was one of the things said, too, at one point. Ami J wrote: --- So I had an emotional breakdown right in the middle of the hallway. And now they're not discussing discharge again until Monday. As if all of life will have changed by then. I want them to keep him in. They act like all of life will fall apart if they do. > > The ever exhausted Ami Fox the whiney mom to - 8 yrs Emma -12 yrs - Migraines, otherwise healthy> stepmom to - 13 yrs - ADD, RADYou go girl be as whiney as you want. It was good in a way that you choose within the hospital to have an emotional breakdown for them to realise that we parents do have breaking points. I wish I could rush over and give you lots of hugs and physical support rather than just tapping on a keyboard half a world away.Best wishes to you all and I do hope things get better soon. at the bottom of the world in New Zealand.(I didn't know got to go to Hawaii) Ami mom to - 8 yrs - Double Lung Tx 2/26/2006, PSC - Pre-Liver Tx, Central DI, Steroid Induced Diabetes, HypoT, GERD, High BP, ADD, Anemia, Malabsorption, No Motility http://www.caringbridge.com/visit/seanfox mom to Emma - 12 yrs - Migraines, otherwise healthy stepmom to - 13 yrs - ADD, RAD ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Sponsored Link$200,000 mortgage for $660/mo - 30/15 yr fixed, reduce debt, home equity - Click now for info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2006 Report Share Posted November 21, 2006 Well, tapping away DOES help. That reminder that there are those of you out there (like, this entire group) who understands what I'm saying. And, yes, went to Hawaii. Apparently that was what Noah wanted for his Make-a-Wish, but at the time they didn't do that in PA. So 's mother set up the trip, instead. Once it was all arranged and paid for, suddenly Make-a-Wish said they could, but it was all taken care of already. So then he said he wants to go I-forget-where (somewhere out of the country) and they don't do that, so he has to come up with something else. LoL. Hawaii was one of the things said, too, at one point. Ami J wrote: --- So I had an emotional breakdown right in the middle of the hallway. And now they're not discussing discharge again until Monday. As if all of life will have changed by then. I want them to keep him in. They act like all of life will fall apart if they do. > > The ever exhausted Ami Fox the whiney mom to - 8 yrs Emma -12 yrs - Migraines, otherwise healthy> stepmom to - 13 yrs - ADD, RADYou go girl be as whiney as you want. It was good in a way that you choose within the hospital to have an emotional breakdown for them to realise that we parents do have breaking points. I wish I could rush over and give you lots of hugs and physical support rather than just tapping on a keyboard half a world away.Best wishes to you all and I do hope things get better soon. at the bottom of the world in New Zealand.(I didn't know got to go to Hawaii) Ami mom to - 8 yrs - Double Lung Tx 2/26/2006, PSC - Pre-Liver Tx, Central DI, Steroid Induced Diabetes, HypoT, GERD, High BP, ADD, Anemia, Malabsorption, No Motility http://www.caringbridge.com/visit/seanfox mom to Emma - 12 yrs - Migraines, otherwise healthy stepmom to - 13 yrs - ADD, RAD ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Sponsored Link$200,000 mortgage for $660/mo - 30/15 yr fixed, reduce debt, home equity - Click now for info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2006 Report Share Posted November 21, 2006 Well, tapping away DOES help. That reminder that there are those of you out there (like, this entire group) who understands what I'm saying. And, yes, went to Hawaii. Apparently that was what Noah wanted for his Make-a-Wish, but at the time they didn't do that in PA. So 's mother set up the trip, instead. Once it was all arranged and paid for, suddenly Make-a-Wish said they could, but it was all taken care of already. So then he said he wants to go I-forget-where (somewhere out of the country) and they don't do that, so he has to come up with something else. LoL. Hawaii was one of the things said, too, at one point. Ami J wrote: --- So I had an emotional breakdown right in the middle of the hallway. And now they're not discussing discharge again until Monday. As if all of life will have changed by then. I want them to keep him in. They act like all of life will fall apart if they do. > > The ever exhausted Ami Fox the whiney mom to - 8 yrs Emma -12 yrs - Migraines, otherwise healthy> stepmom to - 13 yrs - ADD, RADYou go girl be as whiney as you want. It was good in a way that you choose within the hospital to have an emotional breakdown for them to realise that we parents do have breaking points. I wish I could rush over and give you lots of hugs and physical support rather than just tapping on a keyboard half a world away.Best wishes to you all and I do hope things get better soon. at the bottom of the world in New Zealand.(I didn't know got to go to Hawaii) Ami mom to - 8 yrs - Double Lung Tx 2/26/2006, PSC - Pre-Liver Tx, Central DI, Steroid Induced Diabetes, HypoT, GERD, High BP, ADD, Anemia, Malabsorption, No Motility http://www.caringbridge.com/visit/seanfox mom to Emma - 12 yrs - Migraines, otherwise healthy stepmom to - 13 yrs - ADD, RAD ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Sponsored Link$200,000 mortgage for $660/mo - 30/15 yr fixed, reduce debt, home equity - Click now for info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2006 Report Share Posted November 21, 2006 > > was admitted to the hospital on Friday last week because of dehydration due to all the vomitting and diarrhea. They wanted to try to discharge him today or tomorrow, and I'm too exhausted to do it anymore. I just cannot. And he's too tired to care if he's in or if he's out. He's done nothing but sleep the past 5 days. > >... But I'm too tired. I'm worn out and exhausted and I can't do it by myself, and they just don't get that. So I had an emotional breakdown right in the middle of the hallway. > > Thank you for letting me whine and vent and be frustrated. And if anyone has any golden words of sage wisdom, please have at it!!! > > The ever exhausted Ami Fox the whiney > > > Ami Dear Ami I think you are just so brave and not a bit whiney. It is good to let it all out. I think you are trying to do a bit too much. Let the hospital do their part. If you can do that you might be able to find a little time for yourself which you deserve. Try to do something special like having your hair done, getting a massage or just going for a walk. Can you find a chaplin or counsellor to talk to? I know you feel you want to be by his side all the time but you really need time out. Just my opinion of course. Just know our love, thoughts and prayers are reaching out to you Norma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2006 Report Share Posted November 21, 2006 > > was admitted to the hospital on Friday last week because of dehydration due to all the vomitting and diarrhea. They wanted to try to discharge him today or tomorrow, and I'm too exhausted to do it anymore. I just cannot. And he's too tired to care if he's in or if he's out. He's done nothing but sleep the past 5 days. > >... But I'm too tired. I'm worn out and exhausted and I can't do it by myself, and they just don't get that. So I had an emotional breakdown right in the middle of the hallway. > > Thank you for letting me whine and vent and be frustrated. And if anyone has any golden words of sage wisdom, please have at it!!! > > The ever exhausted Ami Fox the whiney > > > Ami Dear Ami I think you are just so brave and not a bit whiney. It is good to let it all out. I think you are trying to do a bit too much. Let the hospital do their part. If you can do that you might be able to find a little time for yourself which you deserve. Try to do something special like having your hair done, getting a massage or just going for a walk. Can you find a chaplin or counsellor to talk to? I know you feel you want to be by his side all the time but you really need time out. Just my opinion of course. Just know our love, thoughts and prayers are reaching out to you Norma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2006 Report Share Posted November 21, 2006 > > was admitted to the hospital on Friday last week because of dehydration due to all the vomitting and diarrhea. They wanted to try to discharge him today or tomorrow, and I'm too exhausted to do it anymore. I just cannot. And he's too tired to care if he's in or if he's out. He's done nothing but sleep the past 5 days. > >... But I'm too tired. I'm worn out and exhausted and I can't do it by myself, and they just don't get that. So I had an emotional breakdown right in the middle of the hallway. > > Thank you for letting me whine and vent and be frustrated. And if anyone has any golden words of sage wisdom, please have at it!!! > > The ever exhausted Ami Fox the whiney > > > Ami Dear Ami I think you are just so brave and not a bit whiney. It is good to let it all out. I think you are trying to do a bit too much. Let the hospital do their part. If you can do that you might be able to find a little time for yourself which you deserve. Try to do something special like having your hair done, getting a massage or just going for a walk. Can you find a chaplin or counsellor to talk to? I know you feel you want to be by his side all the time but you really need time out. Just my opinion of course. Just know our love, thoughts and prayers are reaching out to you Norma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2006 Report Share Posted November 22, 2006 Dear Ami, My heart goes out to you. I wish I could send answers too. Is there someone you know who could take over some of the day's " to do " list for you? A friend, relative, church member? They could be such a big help in taking care of meals, shopping, errands etc. so that you could be with or taking a nap. If the answer is no, then I would go to a church in your community, tell them your situation and ask for help. I know that they would jump in. It sounds like right now you really need support and help from your local community but you need to ask. I know how hard that is but please consider it. I really hope that things get better soon ! Lee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2006 Report Share Posted November 22, 2006 Dear Ami, My heart goes out to you. I wish I could send answers too. Is there someone you know who could take over some of the day's " to do " list for you? A friend, relative, church member? They could be such a big help in taking care of meals, shopping, errands etc. so that you could be with or taking a nap. If the answer is no, then I would go to a church in your community, tell them your situation and ask for help. I know that they would jump in. It sounds like right now you really need support and help from your local community but you need to ask. I know how hard that is but please consider it. I really hope that things get better soon ! Lee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2006 Report Share Posted November 22, 2006 Dear Ami, My heart goes out to you. I wish I could send answers too. Is there someone you know who could take over some of the day's " to do " list for you? A friend, relative, church member? They could be such a big help in taking care of meals, shopping, errands etc. so that you could be with or taking a nap. If the answer is no, then I would go to a church in your community, tell them your situation and ask for help. I know that they would jump in. It sounds like right now you really need support and help from your local community but you need to ask. I know how hard that is but please consider it. I really hope that things get better soon ! Lee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2006 Report Share Posted November 22, 2006 My heart goes out to you. You are not whiney you are just human. All of us go though bad times when we feel we can't cope so you are not alone.All we can do is listern and try to help you as best we can. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2006 Report Share Posted November 22, 2006 My heart goes out to you. You are not whiney you are just human. All of us go though bad times when we feel we can't cope so you are not alone.All we can do is listern and try to help you as best we can. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2006 Report Share Posted November 22, 2006 My heart goes out to you. You are not whiney you are just human. All of us go though bad times when we feel we can't cope so you are not alone.All we can do is listern and try to help you as best we can. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2006 Report Share Posted November 22, 2006 Dear Ami, Your stamina and skill amazes me! You are not whiney! To the contrary, you are brave and steadfast, which probably has helped your son through a multitude of dire situations. Trust your instincts and your gut - you are a fabulous mother, just tired right now, and rightly so. My guess is that with a little rest you will get your second wind once again. Please know that many, many folks are praying and wishing they could be there to help you in some way. You are not alone! Take care, Chris mother of Joe (32), UC 1987, J-pouch 1999, PSC, acute pancreatitis 03/06 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2006 Report Share Posted November 22, 2006 Dear Ami, Your stamina and skill amazes me! You are not whiney! To the contrary, you are brave and steadfast, which probably has helped your son through a multitude of dire situations. Trust your instincts and your gut - you are a fabulous mother, just tired right now, and rightly so. My guess is that with a little rest you will get your second wind once again. Please know that many, many folks are praying and wishing they could be there to help you in some way. You are not alone! Take care, Chris mother of Joe (32), UC 1987, J-pouch 1999, PSC, acute pancreatitis 03/06 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2006 Report Share Posted November 22, 2006 Dear Ami, Your stamina and skill amazes me! You are not whiney! To the contrary, you are brave and steadfast, which probably has helped your son through a multitude of dire situations. Trust your instincts and your gut - you are a fabulous mother, just tired right now, and rightly so. My guess is that with a little rest you will get your second wind once again. Please know that many, many folks are praying and wishing they could be there to help you in some way. You are not alone! Take care, Chris mother of Joe (32), UC 1987, J-pouch 1999, PSC, acute pancreatitis 03/06 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2006 Report Share Posted November 22, 2006 Ami, Go ahead and vent all you want. Sometime you need to do that. Hopefully things will get better soon. Pat (CA)Ami Fox wrote: In the past year he's been diagnosed with end stage pulmonary fibrosis and been transplanted. He's been diagnosed with liver disease and been listed for transplant (8/2/06) with a PELD score of 15 (only because of exception points being given twice). He's developed diabetes insipidus (a pituitary gland disorder) and developed steroid induced insulin dependant diabetes from the prednisone that he'll take for life. He's had a GJ tube place, 8 collapsed lungs, 12 chest tubes, 3 PICC lines placed, a bone marrow biopsy, 5 or 6 bronchoscopies, and 15 ERCP's. He's osteopenic, anemic, hypertensive, hypothyroid, has GERD, malabsorption, no motility, has VRE, and multi system candida infection, along with a question of having osteonecrosis. He's on 17 meds a day, which includes twice daily injections and an insulin pump, and does not include his 20 hours per day TPN. I have little help from my husband, and have 2 other children (girls ages 12 and 13), so for all intents and purposes I'm on my own living at the Mc House 2 1/2 hours from home for the last 14 months. Wisconsin Medicaid (he's on SSI) will not pay for any home nursing care in Minnesota. was admitted to the hospital on Friday last week because of dehydration due to all the vomitting and diarrhea. They wanted to try to discharge him today or tomorrow, and I'm too exhausted to do it anymore. I just cannot. And he's too tired to care if he's in or if he's out. He's done nothing but sleep the past 5 days. I understand there's nothing else they can do for him being in the hospital. They'll adjust his TPN and give us bolus fluids to give him in his line so he doesn't get dehydrated again. They're not giving him antibiotics. They're not going to do an ERCP because they WANT him to get sicker so he'll get his liver sooner. But I'm too tired. I'm worn out and exhausted and I can't do it by myself, and they just don't get that. So I had an emotional breakdown right in the middle of the hallway. And now they're not discussing discharge again until Monday. As if all of life will have changed by then. I want them to keep him in. They act like all of life will fall apart if they do. I understand they want him as sick as possible but without infection, but then they have to give me some help. And if that help means keeping him at the hospital, then do it. It's not as if I'm abandoning him there. I'm there all day long with him every single day and sleeping there many nights. And I'm still doing a lot of his stuff (shots, insulin pump changes, helping with meds, etc, etc). I'm not trying to just dump my baby off on the hospital like so many of the kids I've seen there who don't have a parent set foot in the place until it's time to pick them up. And I don't know what to do. (Other than be jealous that got to go to Hawaii!!!!) Thank you for letting me whine and vent and be frustrated. And if anyone has any golden words of sage wisdom, please have at it!!! The ever exhausted Ami Fox the whiney Ami mom to - 8 yrs - Double Lung Tx 2/26/2006, PSC - Pre-Liver Tx, Central DI, Steroid Induced Diabetes, HypoT, GERD, High BP, ADD, Anemia, Malabsorption, No Motility http://www.caringbridge.com/visit/seanfox mom to Emma - 12 yrs - Migraines, otherwise healthy stepmom to - 13 yrs - ADD, RAD ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Sponsored LinkMortgage rates near historic lows: $150,000 loan as low as $579/mo. Intro-*Terms Sponsored Link Mortgage rates as low as 4.625% - $150,000 loan for $579 a month. Intro-*Terms Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2006 Report Share Posted November 22, 2006 Ami, Go ahead and vent all you want. Sometime you need to do that. Hopefully things will get better soon. Pat (CA)Ami Fox wrote: In the past year he's been diagnosed with end stage pulmonary fibrosis and been transplanted. He's been diagnosed with liver disease and been listed for transplant (8/2/06) with a PELD score of 15 (only because of exception points being given twice). He's developed diabetes insipidus (a pituitary gland disorder) and developed steroid induced insulin dependant diabetes from the prednisone that he'll take for life. He's had a GJ tube place, 8 collapsed lungs, 12 chest tubes, 3 PICC lines placed, a bone marrow biopsy, 5 or 6 bronchoscopies, and 15 ERCP's. He's osteopenic, anemic, hypertensive, hypothyroid, has GERD, malabsorption, no motility, has VRE, and multi system candida infection, along with a question of having osteonecrosis. He's on 17 meds a day, which includes twice daily injections and an insulin pump, and does not include his 20 hours per day TPN. I have little help from my husband, and have 2 other children (girls ages 12 and 13), so for all intents and purposes I'm on my own living at the Mc House 2 1/2 hours from home for the last 14 months. Wisconsin Medicaid (he's on SSI) will not pay for any home nursing care in Minnesota. was admitted to the hospital on Friday last week because of dehydration due to all the vomitting and diarrhea. They wanted to try to discharge him today or tomorrow, and I'm too exhausted to do it anymore. I just cannot. And he's too tired to care if he's in or if he's out. He's done nothing but sleep the past 5 days. I understand there's nothing else they can do for him being in the hospital. They'll adjust his TPN and give us bolus fluids to give him in his line so he doesn't get dehydrated again. They're not giving him antibiotics. They're not going to do an ERCP because they WANT him to get sicker so he'll get his liver sooner. But I'm too tired. I'm worn out and exhausted and I can't do it by myself, and they just don't get that. So I had an emotional breakdown right in the middle of the hallway. And now they're not discussing discharge again until Monday. As if all of life will have changed by then. I want them to keep him in. They act like all of life will fall apart if they do. I understand they want him as sick as possible but without infection, but then they have to give me some help. And if that help means keeping him at the hospital, then do it. It's not as if I'm abandoning him there. I'm there all day long with him every single day and sleeping there many nights. And I'm still doing a lot of his stuff (shots, insulin pump changes, helping with meds, etc, etc). I'm not trying to just dump my baby off on the hospital like so many of the kids I've seen there who don't have a parent set foot in the place until it's time to pick them up. And I don't know what to do. (Other than be jealous that got to go to Hawaii!!!!) Thank you for letting me whine and vent and be frustrated. And if anyone has any golden words of sage wisdom, please have at it!!! The ever exhausted Ami Fox the whiney Ami mom to - 8 yrs - Double Lung Tx 2/26/2006, PSC - Pre-Liver Tx, Central DI, Steroid Induced Diabetes, HypoT, GERD, High BP, ADD, Anemia, Malabsorption, No Motility http://www.caringbridge.com/visit/seanfox mom to Emma - 12 yrs - Migraines, otherwise healthy stepmom to - 13 yrs - ADD, RAD ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Sponsored LinkMortgage rates near historic lows: $150,000 loan as low as $579/mo. Intro-*Terms Sponsored Link Mortgage rates as low as 4.625% - $150,000 loan for $579 a month. Intro-*Terms Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2006 Report Share Posted November 22, 2006 Ami, Go ahead and vent all you want. Sometime you need to do that. Hopefully things will get better soon. Pat (CA)Ami Fox wrote: In the past year he's been diagnosed with end stage pulmonary fibrosis and been transplanted. He's been diagnosed with liver disease and been listed for transplant (8/2/06) with a PELD score of 15 (only because of exception points being given twice). He's developed diabetes insipidus (a pituitary gland disorder) and developed steroid induced insulin dependant diabetes from the prednisone that he'll take for life. He's had a GJ tube place, 8 collapsed lungs, 12 chest tubes, 3 PICC lines placed, a bone marrow biopsy, 5 or 6 bronchoscopies, and 15 ERCP's. He's osteopenic, anemic, hypertensive, hypothyroid, has GERD, malabsorption, no motility, has VRE, and multi system candida infection, along with a question of having osteonecrosis. He's on 17 meds a day, which includes twice daily injections and an insulin pump, and does not include his 20 hours per day TPN. I have little help from my husband, and have 2 other children (girls ages 12 and 13), so for all intents and purposes I'm on my own living at the Mc House 2 1/2 hours from home for the last 14 months. Wisconsin Medicaid (he's on SSI) will not pay for any home nursing care in Minnesota. was admitted to the hospital on Friday last week because of dehydration due to all the vomitting and diarrhea. They wanted to try to discharge him today or tomorrow, and I'm too exhausted to do it anymore. I just cannot. And he's too tired to care if he's in or if he's out. He's done nothing but sleep the past 5 days. I understand there's nothing else they can do for him being in the hospital. They'll adjust his TPN and give us bolus fluids to give him in his line so he doesn't get dehydrated again. They're not giving him antibiotics. They're not going to do an ERCP because they WANT him to get sicker so he'll get his liver sooner. But I'm too tired. I'm worn out and exhausted and I can't do it by myself, and they just don't get that. So I had an emotional breakdown right in the middle of the hallway. And now they're not discussing discharge again until Monday. As if all of life will have changed by then. I want them to keep him in. They act like all of life will fall apart if they do. I understand they want him as sick as possible but without infection, but then they have to give me some help. And if that help means keeping him at the hospital, then do it. It's not as if I'm abandoning him there. I'm there all day long with him every single day and sleeping there many nights. And I'm still doing a lot of his stuff (shots, insulin pump changes, helping with meds, etc, etc). I'm not trying to just dump my baby off on the hospital like so many of the kids I've seen there who don't have a parent set foot in the place until it's time to pick them up. And I don't know what to do. (Other than be jealous that got to go to Hawaii!!!!) Thank you for letting me whine and vent and be frustrated. And if anyone has any golden words of sage wisdom, please have at it!!! The ever exhausted Ami Fox the whiney Ami mom to - 8 yrs - Double Lung Tx 2/26/2006, PSC - Pre-Liver Tx, Central DI, Steroid Induced Diabetes, HypoT, GERD, High BP, ADD, Anemia, Malabsorption, No Motility http://www.caringbridge.com/visit/seanfox mom to Emma - 12 yrs - Migraines, otherwise healthy stepmom to - 13 yrs - ADD, RAD ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Sponsored LinkMortgage rates near historic lows: $150,000 loan as low as $579/mo. Intro-*Terms Sponsored Link Mortgage rates as low as 4.625% - $150,000 loan for $579 a month. Intro-*Terms Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2006 Report Share Posted November 24, 2006 Ami, I don't know what others in the group have said, but please, talk to the social worker on the transplant team. These people are there to find a way to give you help, to support you when all else falls apart. If that person isn't helpful, then keep kicking and screaming just as you are until someone listens. Your littany of diagnosises for your son made me just want to cry. I'd be ready to quit by now, but all you're saying is that you can't do more. God bless you and the rest of your family, too. I'm trying to think of what other organizations in your community could provide help for you - do you have a church that you're affiliated with or that someone you're related to goes to? Maybe they could help some with your kids at home or provide other aid. I have a new book that I'm reading that a family member actually wrote that's about developing support systems. (I don't have it with me, but I'll post the title soon.) I'll keep praying that something positive happens for you all --- soon! I so wish I were closer so that I could do more. Love, Deb in VA Feeling much better at home, though still exhausted after insisting that I cook the turkey, sweet potatoes, and corn casserole one day out of the hospital...for updates see: www.caringbridge.org/va/deniseb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 26, 2006 Report Share Posted November 26, 2006 Hi Ami Just checking to see how you are. thinking of you from the bottom of the world Quote Link to comment Share on other sites More sharing options...
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