Guest guest Posted January 3, 2008 Report Share Posted January 3, 2008 Hi Norma- Did your mom have the bedside swallow evaluation or did she actually go have the swallow evaluation where food is tainted with dye and she sets in front of an X-Ray screen to watch where the food goes? My dad had had both. It is not uncommon not to be able to swallow water or any of the thinner liquids. That is where the thick-it comes in. My had had a PEG tube in January 2000 as he had aspirated and ended up with aspiration pneumonia. He was very ill. The tube stayed in until April 2000 My dad really hated it. He would pull the nutrition tube from his belly and swing it around sending the nutrition all around the room. Long story how he ended up with the tube. He did prevail and as I mentioned had the tube removed. He gained back all his weight and was able to walk again. He regained his strength and went on to live another 2 1/2 years. I have heard this is rare to have the tube removed and to survive it. The second time eating became an issue I opted not to have a feeding tube. My dad was so far advanced in the disease that I didn't know what we would gain but a few more days in the hell he was living. It didn't seem like the right thing to do. When I made my decision the doctors and my brother agreed. (I held POA over my dad's medical and financial decisions). This morning I am wondering how your mom is doing. I shall hold you close to my heart today and shall send up special prayers for you and your family. Hugs to you- Sandie Des Moines, IA dad, Merle, passed away from LBD 9-20-02, age 65 mum, Jo, (MIL) passed away from LBD 4-29-07, age 78 -- RE: Swallowing Though I'm writing before all of the tests of been performed, a swallowing test was given to my Mom this morning in the hospital (she aspirated on Friday). I'm told she has very limited movement and couldn't swallow applesauce. She was also not able to swallow water. Last week she was still eating full meals. She currently has a staph infection which may be compromising her more, but I don't think it's going to make that much difference (maybe I'm wrong). They are going to check her esophagus later today and will probably need to put in a peg for a feeding tube. I know many of you have written about swallowing issues, etc. before but I hadn't paid too much attention at that point. I don't see anything on our support group list under swallowing so I just thought I'd check with all of you re feeding tubes and if any of your loved ones have one. I'm told it can be temporary. Thanks, Norma Welcome to LBDcaregivers. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2008 Report Share Posted January 3, 2008 Dear Sandie, Thank you for all that you said. Mom had the bedside evaluation done and because she was unable to swallow anything then, they didn't bother with the x-ray analysis. Early this afternoon the gastro doctor is going to look down her esophagus and see where the hiatal hernia is and what else might be going on. Depending on what he sees, they will probably put in a feeding peg tomorrow. (She hasn't eaten in a week.) It seems to be the right thing to do at this particular point. I am amazed that your Dad was able to come back from not swallowing, then gaining weight and then walking! My expectations are not that high (it wouldn't be possible at this point). Her spirit is strong, her coloring is good and I am so happy to see her whenever I visit. I am taking one day at a time (and, many days, one HOUR at a time). I will post again later today or tomorrow. Thank you so much for your thoughts and prayers. " Sandie/ " <sanclown@... m> To Sent by: <LBDcaregivers > LBDcaregivers@yah cc oogroups.com Subject RE: Norma - 01/03/2008 07:22 Swallowing AM Please respond to LBDcaregivers@yah oogroups.com Hi Norma- Did your mom have the bedside swallow evaluation or did she actually go have the swallow evaluation where food is tainted with dye and she sets in front of an X-Ray screen to watch where the food goes? My dad had had both. It is not uncommon not to be able to swallow water or any of the thinner liquids. That is where the thick-it comes in. My had had a PEG tube in January 2000 as he had aspirated and ended up with aspiration pneumonia. He was very ill. The tube stayed in until April 2000 My dad really hated it. He would pull the nutrition tube from his belly and swing it around sending the nutrition all around the room. Long story how he ended up with the tube. He did prevail and as I mentioned had the tube removed. He gained back all his weight and was able to walk again. He regained his strength and went on to live another 2 1/2 years. I have heard this is rare to have the tube removed and to survive it. The second time eating became an issue I opted not to have a feeding tube. My dad was so far advanced in the disease that I didn't know what we would gain but a few more days in the hell he was living. It didn't seem like the right thing to do. When I made my decision the doctors and my brother agreed. (I held POA over my dad's medical and financial decisions). This morning I am wondering how your mom is doing. I shall hold you close to my heart today and shall send up special prayers for you and your family. Hugs to you- Sandie Des Moines, IA dad, Merle, passed away from LBD 9-20-02, age 65 mum, Jo, (MIL) passed away from LBD 4-29-07, age 78 -- RE: Swallowing Though I'm writing before all of the tests of been performed, a swallowing test was given to my Mom this morning in the hospital (she aspirated on Friday). I'm told she has very limited movement and couldn't swallow applesauce. She was also not able to swallow water. Last week she was still eating full meals. She currently has a staph infection which may be compromising her more, but I don't think it's going to make that much difference (maybe I'm wrong). They are going to check her esophagus later today and will probably need to put in a peg for a feeding tube. I know many of you have written about swallowing issues, etc. before but I hadn't paid too much attention at that point. I don't see anything on our support group list under swallowing so I just thought I'd check with all of you re feeding tubes and if any of your loved ones have one. I'm told it can be temporary. Thanks, Norma Welcome to LBDcaregivers. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2008 Report Share Posted January 3, 2008 Norma- To see my dad before the aspiration pneumonia then right after and the PEG tube one would think he had aged years. He looked so old and frail. I had a couple I work with that thought he was my grandpa during those times. Then to see my dad prevail. To go from bed bound, weak and frail to walking and healthy was a true miracle. It took physical therapy and lots of prayers but he did make it. As long as there is life, there is hope. Truly holding you and your dear mom close in my thoughts, heart, and prayers- Sandie Des Moines, IA dad, Merle, passed away from LBD 9-20-02, age 65 mum, Jo, (MIL) passed away from LBD 4-29-07, age 78 -- RE: Swallowing Though I'm writing before all of the tests of been performed, a swallowing test was given to my Mom this morning in the hospital (she aspirated on Friday). I'm told she has very limited movement and couldn't swallow applesauce. She was also not able to swallow water. Last week she was still eating full meals. She currently has a staph infection which may be compromising her more, but I don't think it's going to make that much difference (maybe I'm wrong). They are going to check her esophagus later today and will probably need to put in a peg for a feeding tube. I know many of you have written about swallowing issues, etc. before but I hadn't paid too much attention at that point. I don't see anything on our support group list under swallowing so I just thought I'd check with all of you re feeding tubes and if any of your loved ones have one. I'm told it can be temporary. Thanks, Norma Welcome to LBDcaregivers. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2008 Report Share Posted January 3, 2008 Thank you again, Sandie. " Sandie/ " <sanclown@... m> To Sent by: <LBDcaregivers > LBDcaregivers@yah cc oogroups.com Subject RE: Norma - 01/03/2008 09:49 Swallowing AM Please respond to LBDcaregivers@yah oogroups.com Norma- To see my dad before the aspiration pneumonia then right after and the PEG tube one would think he had aged years. He looked so old and frail. I had a couple I work with that thought he was my grandpa during those times. Then to see my dad prevail. To go from bed bound, weak and frail to walking and healthy was a true miracle. It took physical therapy and lots of prayers but he did make it. As long as there is life, there is hope. Truly holding you and your dear mom close in my thoughts, heart, and prayers- Sandie Des Moines, IA dad, Merle, passed away from LBD 9-20-02, age 65 mum, Jo, (MIL) passed away from LBD 4-29-07, age 78 -- RE: Swallowing Though I'm writing before all of the tests of been performed, a swallowing test was given to my Mom this morning in the hospital (she aspirated on Friday). I'm told she has very limited movement and couldn't swallow applesauce. She was also not able to swallow water. Last week she was still eating full meals. She currently has a staph infection which may be compromising her more, but I don't think it's going to make that much difference (maybe I'm wrong). They are going to check her esophagus later today and will probably need to put in a peg for a feeding tube. I know many of you have written about swallowing issues, etc. before but I hadn't paid too much attention at that point. I don't see anything on our support group list under swallowing so I just thought I'd check with all of you re feeding tubes and if any of your loved ones have one. I'm told it can be temporary. Thanks, Norma Welcome to LBDcaregivers. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2008 Report Share Posted January 4, 2008 Hi Norma- Did I miss anything regarding your mom's esophagus being checked? Also, was a PEG tube inserted? I have kept you and your mom in my prayers. Please let me/us know how your mom is doing. Thank you. Many hugs to you- Sandie  Des Moines, IA dad, Merle, passed away from LBD 9-20-02, age 65 mum, Jo, (MIL) passed away from LBD 4-29-07, age 78 -- RE: Swallowing Though I'm writing before all of the tests of been performed, a swallowing test was given to my Mom this morning in the hospital (she aspirated on Friday). I'm told she has very limited movement and couldn't swallow applesauce. She was also not able to swallow water. Last week she was still eating full meals. She currently has a staph infection which may be compromising her more, but I don't think it's going to make that much difference (maybe I'm wrong). They are going to check her esophagus later today and will probably need to put in a peg for a feeding tube. I know many of you have written about swallowing issues, etc. before but I hadn't paid too much attention at that point. I don't see anything on our support group list under swallowing so I just thought I'd check with all of you re feeding tubes and if any of your loved ones have one. I'm told it can be temporary. Thanks, Norma Welcome to LBDcaregivers. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2008 Report Share Posted January 5, 2008 Sandie, thank you so much for asking. It seems her esophagus is inflamed and she's unable to move food. So, yes, a peg feeding tube was inserted into her stomach yesterday. She is now slowly (as of this morning) receiving nourishment after a week. She smiled at me this afternoon and seemed to be doing a little better. But she is so tired (so many antibiotics for the MCER staph infection). I am very grateful for the care she has been receiving in the CCR all week and will hope it can continue to the best degree it can when she is transferred to a regular hospital unit soon. Thank you for keeping her in your thoughts and prayers. RE: Swallowing Though I'm writing before all of the tests of been performed, a swallowing test was given to my Mom this morning in the hospital (she aspirated on Friday). I'm told she has very limited movement and couldn't swallow applesauce. She was also not able to swallow water. Last week she was still eating full meals. She currently has a staph infection which may be compromising her more, but I don't think it's going to make that much difference (maybe I'm wrong). They are going to check her esophagus later today and will probably need to put in a peg for a feeding tube. I know many of you have written about swallowing issues, etc. before but I hadn't paid too much attention at that point. I don't see anything on our support group list under swallowing so I just thought I'd check with all of you re feeding tubes and if any of your loved ones have one. I'm told it can be temporary. Thanks, Norma Welcome to LBDcaregivers. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2008 Report Share Posted January 5, 2008 Hi Norma- Thank you for the update. Will your mom's esophagus go down and no longer be inflamed? Was your mom awake when the PEG tube was inserted? My dad needed to be put under for what would have been a very simple procedure. Is your mom kept upright while receiving the nutrition? I was told my dad needed to be so he wouldn't aspirate and it was easier to digest. Oh I am so happy your mom smiled. Such a precious gift! It's great news hearing she is doing better. Please do keep us updated as to how she is. I do think it makes a world of difference the type of care given as well. It s a comfort knowing a loved one is being taken care of. Please take care of you as well. Definitely keeping you and your mom in my thoughts and prayers. Many heartfelt hugs to you Norma- Sandie  Des Moines, IA dad, Merle, passed away from LBD 9-20-02, age 65 mum, Jo, (MIL) passed away from LBD 4-29-07, age 78 -- Re: Norma - Swallowing Sandie, thank you so much for asking. It seems her esophagus is inflamed and she's unable to move food. So, yes, a peg feeding tube was inserted into her stomach yesterday. She is now slowly (as of this morning) receiving nourishment after a week. She smiled at me this afternoon and seemed to be doing a little better. But she is so tired (so many antibiotics for the MCER staph infection). I am very grateful for the care she has been receiving in the CCR all week and will hope it can continue to the best degree it can when she is transferred to a regular hospital unit soon. Thank you for keeping her in your thoughts and prayers. RE: Swallowing Though I'm writing before all of the tests of been performed, a swallowing test was given to my Mom this morning in the hospital (she aspirated on Friday). I'm told she has very limited movement and couldn't swallow applesauce. She was also not able to swallow water. Last week she was still eating full meals. She currently has a staph infection which may be compromising her more, but I don't think it's going to make that much difference (maybe I'm wrong). They are going to check her esophagus later today and will probably need to put in a peg for a feeding tube. I know many of you have written about swallowing issues, etc. before but I hadn't paid too much attention at that point. I don't see anything on our support group list under swallowing so I just thought I'd check with all of you re feeding tubes and if any of your loved ones have one. I'm told it can be temporary. Thanks, Norma Welcome to LBDcaregivers. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2008 Report Share Posted January 7, 2008 Sandie, Thank you again for your concern. I'm waiting to hear back from the gastro doctor. I was going to ask the same question you asked, namely, can the esophagus inflamation go down. It didn't seem that's the case, but I'm going to ask. And I'll find out about sitting upright as well. Thanks for the questions. She's out of ICU as of yesterday and I'm waiting to speak to the internist today re her coming home. I'll write again. And thank you, Norma " Sandie/ " <sanclown@... m> To Sent by: <LBDcaregivers > LBDcaregivers@yah cc oogroups.com Subject Re: Norma - 01/05/2008 04:12 Swallowing PM Please respond to LBDcaregivers@yah oogroups.com Hi Norma- Thank you for the update. Will your mom's esophagus go down and no longer be inflamed? Was your mom awake when the PEG tube was inserted? My dad needed to be put under for what would have been a very simple procedure. Is your mom kept upright while receiving the nutrition? I was told my dad needed to be so he wouldn't aspirate and it was easier to digest. Oh I am so happy your mom smiled. Such a precious gift! It's great news hearing she is doing better. Please do keep us updated as to how she is. I do think it makes a world of difference the type of care given as well. It s a comfort knowing a loved one is being taken care of. Please take care of you as well. Definitely keeping you and your mom in my thoughts and prayers. Many heartfelt hugs to you Norma- Sandie Des Moines, IA dad, Merle, passed away from LBD 9-20-02, age 65 mum, Jo, (MIL) passed away from LBD 4-29-07, age 78 -- Re: Norma - Swallowing Sandie, thank you so much for asking. It seems her esophagus is inflamed and she's unable to move food. So, yes, a peg feeding tube was inserted into her stomach yesterday. She is now slowly (as of this morning) receiving nourishment after a week. She smiled at me this afternoon and seemed to be doing a little better. But she is so tired (so many antibiotics for the MCER staph infection). I am very grateful for the care she has been receiving in the CCR all week and will hope it can continue to the best degree it can when she is transferred to a regular hospital unit soon. Thank you for keeping her in your thoughts and prayers. RE: Swallowing Though I'm writing before all of the tests of been performed, a swallowing test was given to my Mom this morning in the hospital (she aspirated on Friday). I'm told she has very limited movement and couldn't swallow applesauce. She was also not able to swallow water. Last week she was still eating full meals. She currently has a staph infection which may be compromising her more, but I don't think it's going to make that much difference (maybe I'm wrong). They are going to check her esophagus later today and will probably need to put in a peg for a feeding tube. I know many of you have written about swallowing issues, etc. before but I hadn't paid too much attention at that point. I don't see anything on our support group list under swallowing so I just thought I'd check with all of you re feeding tubes and if any of your loved ones have one. I'm told it can be temporary. Thanks, Norma Welcome to LBDcaregivers. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2008 Report Share Posted January 7, 2008 Norma- Thank you for the update. This is so close to my heart having gone through this with my dad. I am so very pleased your mom is out of ICU. An answered prayer that I shall now send up praises for. Looking forward to hearing from you again, as time permits. Many, many hugs- Sandie Des Moines, IA dad, Merle, passed away from LBD 9-20-02, age 65 mum, Jo, (MIL) passed away from LBD 4-29-07, age 78 -- Re: Norma - Swallowing Sandie, thank you so much for asking. It seems her esophagus is inflamed and she's unable to move food. So, yes, a peg feeding tube was inserted into her stomach yesterday. She is now slowly (as of this morning) receiving nourishment after a week. She smiled at me this afternoon and seemed to be doing a little better. But she is so tired (so many antibiotics for the MCER staph infection). I am very grateful for the care she has been receiving in the CCR all week and will hope it can continue to the best degree it can when she is transferred to a regular hospital unit soon. Thank you for keeping her in your thoughts and prayers. RE: Swallowing Though I'm writing before all of the tests of been performed, a swallowing test was given to my Mom this morning in the hospital (she aspirated on Friday). I'm told she has very limited movement and couldn't swallow applesauce. She was also not able to swallow water. Last week she was still eating full meals. She currently has a staph infection which may be compromising her more, but I don't think it's going to make that much difference (maybe I'm wrong). They are going to check her esophagus later today and will probably need to put in a peg for a feeding tube. I know many of you have written about swallowing issues, etc. before but I hadn't paid too much attention at that point. I don't see anything on our support group list under swallowing so I just thought I'd check with all of you re feeding tubes and if any of your loved ones have one. I'm told it can be temporary. Thanks, Norma Welcome to LBDcaregivers. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2008 Report Share Posted January 8, 2008 Norma, If there is inflammation in the esophagus, it will be treated. I'm sure they took biopsies, and depending on what those show, they will be able to treat it easily. Infections such as a yeast infection in the esophagus are VERY painful but easily treated. Hopefully once that's under control, the PEG tube can be taken out! Engles SEIU-UHW Shop Steward ________________________________________________________________________________\ ____ Never miss a thing. Make Yahoo your home page. http://www.yahoo.com/r/hs Quote Link to comment Share on other sites More sharing options...
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