Guest guest Posted December 7, 2006 Report Share Posted December 7, 2006 How is his spleen faring in all of this? Since he has a giant liver does he have varices or ascites? Is he getting any exception points? This child needs transplanted…I know…NO DUH! Wow! I just don’t know what to say. It makes you just want to lay in bed with him and make it alright, but I KNOW you said he is so not up for that. So is the CRP elevated because of the pneumatosis? Or is there inflammation elsewhere? What do they do with the other low numbers? Do they give him blood or what? I have never dealt with that, so I am really a dummy. Educate me, Ami. You and are in my thoughts, and Noah and my prayers everyday. Love, P.S. Are you still carving some time out for yourself? Is Jon still there? Mom of Zoe (13) super soccer player; Noah (9) UC, PSC, and osteopenia and a great soccer and basketball player and; Aidan (5) moderately-severely hearing impaired great basketball shot (10-foot hoop none-the-less) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2006 Report Share Posted December 7, 2006 How is his spleen faring in all of this? Since he has a giant liver does he have varices or ascites? Is he getting any exception points? This child needs transplanted…I know…NO DUH! Wow! I just don’t know what to say. It makes you just want to lay in bed with him and make it alright, but I KNOW you said he is so not up for that. So is the CRP elevated because of the pneumatosis? Or is there inflammation elsewhere? What do they do with the other low numbers? Do they give him blood or what? I have never dealt with that, so I am really a dummy. Educate me, Ami. You and are in my thoughts, and Noah and my prayers everyday. Love, P.S. Are you still carving some time out for yourself? Is Jon still there? Mom of Zoe (13) super soccer player; Noah (9) UC, PSC, and osteopenia and a great soccer and basketball player and; Aidan (5) moderately-severely hearing impaired great basketball shot (10-foot hoop none-the-less) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2006 Report Share Posted December 7, 2006 How is his spleen faring in all of this? Since he has a giant liver does he have varices or ascites? Is he getting any exception points? This child needs transplanted…I know…NO DUH! Wow! I just don’t know what to say. It makes you just want to lay in bed with him and make it alright, but I KNOW you said he is so not up for that. So is the CRP elevated because of the pneumatosis? Or is there inflammation elsewhere? What do they do with the other low numbers? Do they give him blood or what? I have never dealt with that, so I am really a dummy. Educate me, Ami. You and are in my thoughts, and Noah and my prayers everyday. Love, P.S. Are you still carving some time out for yourself? Is Jon still there? Mom of Zoe (13) super soccer player; Noah (9) UC, PSC, and osteopenia and a great soccer and basketball player and; Aidan (5) moderately-severely hearing impaired great basketball shot (10-foot hoop none-the-less) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2006 Report Share Posted December 7, 2006 Ami, More prayers for you and yours. I'm so very sorry that has taken another turn for the worse. You have every right to be frustrated. I'd be throwing things by now, if I were you! You are an amazing Mom. Hang in there and know that we're all routing for you! Love, Deb in VA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2006 Report Share Posted December 7, 2006 Ami, More prayers for you and yours. I'm so very sorry that has taken another turn for the worse. You have every right to be frustrated. I'd be throwing things by now, if I were you! You are an amazing Mom. Hang in there and know that we're all routing for you! Love, Deb in VA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2006 Report Share Posted December 7, 2006 Ami, More prayers for you and yours. I'm so very sorry that has taken another turn for the worse. You have every right to be frustrated. I'd be throwing things by now, if I were you! You are an amazing Mom. Hang in there and know that we're all routing for you! Love, Deb in VA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2006 Report Share Posted December 7, 2006 I don't recall his CRP being so high with the other pneumatosis, so I'm not sure. I do know that overnight now, his temp was up over 104, and that gram negative rods grew out of his line culture, so he does have infection in his PICC line. Which would, of course, explain the fevers. His spleen is a bit enlarged, but not too bad. No varices or ascites. He did get exception points. His PELD is a 15. Which is pretty good when considering that he'd be about a 4 all on his own. If he gets closer to 8 they'll probably give him blood again, but I doubt they will with where he is now. Otherwise, if he's chronically staying low like he did last winter, they'll likely put him back on epoegin shots, which he'll absolutely detest. He was so excited when his hemoglobin passed 11 and he could stop those. How is Noah feeling? How are you doing? Ami wrote: How is his spleen faring in all of this? Since he has a giant liver does he have varices or ascites? Is he getting any exception points? This child needs transplanted…I know…NO DUH! Wow! I just don’t know what to say. It makes you just want to lay in bed with him and make it alright, but I KNOW you said he is so not up for that. So is the CRP elevated because of the pneumatosis? Or is there inflammation elsewhere? What do they do with the other low numbers? Do they give him blood or what? I have never dealt with that, so I am really a dummy. Educate me, Ami. You and are in my thoughts, and Noah and my prayers everyday. Love, P.S. Are you still carving some time out for yourself? Is Jon still there? Mom of Zoe (13) super soccer player; Noah (9) UC, PSC, and osteopenia and a great soccer and basketball player and; Aidan (5) moderately-severely hearing impaired great basketball shot (10-foot hoop none-the-less) 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, Osteopenia, No Motility http://www.caringbridge.com/visit/seanfox mom to Emma - 12 yrs - Migraines, otherwise healthy stepmom to - 13 yrs - ADD, ODD ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Want to start your own business? Learn how on Yahoo! Small Business. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2006 Report Share Posted December 7, 2006 I don't recall his CRP being so high with the other pneumatosis, so I'm not sure. I do know that overnight now, his temp was up over 104, and that gram negative rods grew out of his line culture, so he does have infection in his PICC line. Which would, of course, explain the fevers. His spleen is a bit enlarged, but not too bad. No varices or ascites. He did get exception points. His PELD is a 15. Which is pretty good when considering that he'd be about a 4 all on his own. If he gets closer to 8 they'll probably give him blood again, but I doubt they will with where he is now. Otherwise, if he's chronically staying low like he did last winter, they'll likely put him back on epoegin shots, which he'll absolutely detest. He was so excited when his hemoglobin passed 11 and he could stop those. How is Noah feeling? How are you doing? Ami wrote: How is his spleen faring in all of this? Since he has a giant liver does he have varices or ascites? Is he getting any exception points? This child needs transplanted…I know…NO DUH! Wow! I just don’t know what to say. It makes you just want to lay in bed with him and make it alright, but I KNOW you said he is so not up for that. So is the CRP elevated because of the pneumatosis? Or is there inflammation elsewhere? What do they do with the other low numbers? Do they give him blood or what? I have never dealt with that, so I am really a dummy. Educate me, Ami. You and are in my thoughts, and Noah and my prayers everyday. Love, P.S. Are you still carving some time out for yourself? Is Jon still there? Mom of Zoe (13) super soccer player; Noah (9) UC, PSC, and osteopenia and a great soccer and basketball player and; Aidan (5) moderately-severely hearing impaired great basketball shot (10-foot hoop none-the-less) 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, Osteopenia, No Motility http://www.caringbridge.com/visit/seanfox mom to Emma - 12 yrs - Migraines, otherwise healthy stepmom to - 13 yrs - ADD, ODD ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Want to start your own business? Learn how on Yahoo! Small Business. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2006 Report Share Posted December 7, 2006 I don't recall his CRP being so high with the other pneumatosis, so I'm not sure. I do know that overnight now, his temp was up over 104, and that gram negative rods grew out of his line culture, so he does have infection in his PICC line. Which would, of course, explain the fevers. His spleen is a bit enlarged, but not too bad. No varices or ascites. He did get exception points. His PELD is a 15. Which is pretty good when considering that he'd be about a 4 all on his own. If he gets closer to 8 they'll probably give him blood again, but I doubt they will with where he is now. Otherwise, if he's chronically staying low like he did last winter, they'll likely put him back on epoegin shots, which he'll absolutely detest. He was so excited when his hemoglobin passed 11 and he could stop those. How is Noah feeling? How are you doing? Ami wrote: How is his spleen faring in all of this? Since he has a giant liver does he have varices or ascites? Is he getting any exception points? This child needs transplanted…I know…NO DUH! Wow! I just don’t know what to say. It makes you just want to lay in bed with him and make it alright, but I KNOW you said he is so not up for that. So is the CRP elevated because of the pneumatosis? Or is there inflammation elsewhere? What do they do with the other low numbers? Do they give him blood or what? I have never dealt with that, so I am really a dummy. Educate me, Ami. You and are in my thoughts, and Noah and my prayers everyday. Love, P.S. Are you still carving some time out for yourself? Is Jon still there? Mom of Zoe (13) super soccer player; Noah (9) UC, PSC, and osteopenia and a great soccer and basketball player and; Aidan (5) moderately-severely hearing impaired great basketball shot (10-foot hoop none-the-less) 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, Osteopenia, No Motility http://www.caringbridge.com/visit/seanfox mom to Emma - 12 yrs - Migraines, otherwise healthy stepmom to - 13 yrs - ADD, ODD ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Want to start your own business? Learn how on Yahoo! Small Business. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2006 Report Share Posted December 7, 2006 Thanks, Deb. I don't know that I'm *feeling* overly amazing right now. But I'm definitely have the urge for throwing things - LoL. Especially since his temp was up over 104 by this morning and we now know he has a line infection. Yippee! I know it's one of the risks of having a line, but for jeez sake, he had the one line in for over 6 months without EVER having an infection in it!!!!!!!!!!! AmiDeb in VA wrote: Ami,More prayers for you and yours. I'm so very sorry that has taken another turn for the worse. You have every right to be frustrated. I'd be throwing things by now, if I were you! You are an amazing Mom. Hang in there and know that we're all routing for you!Love,Deb in VA 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, Osteopenia, No Motility http://www.caringbridge.com/visit/seanfox mom to Emma - 12 yrs - Migraines, otherwise healthy stepmom to - 13 yrs - ADD, ODD ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Want to start your own business? Learn how on Yahoo! Small Business. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2006 Report Share Posted December 7, 2006 Thanks, Deb. I don't know that I'm *feeling* overly amazing right now. But I'm definitely have the urge for throwing things - LoL. Especially since his temp was up over 104 by this morning and we now know he has a line infection. Yippee! I know it's one of the risks of having a line, but for jeez sake, he had the one line in for over 6 months without EVER having an infection in it!!!!!!!!!!! AmiDeb in VA wrote: Ami,More prayers for you and yours. I'm so very sorry that has taken another turn for the worse. You have every right to be frustrated. I'd be throwing things by now, if I were you! You are an amazing Mom. Hang in there and know that we're all routing for you!Love,Deb in VA 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, Osteopenia, No Motility http://www.caringbridge.com/visit/seanfox mom to Emma - 12 yrs - Migraines, otherwise healthy stepmom to - 13 yrs - ADD, ODD ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Want to start your own business? Learn how on Yahoo! Small Business. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2006 Report Share Posted December 7, 2006 Thanks, Deb. I don't know that I'm *feeling* overly amazing right now. But I'm definitely have the urge for throwing things - LoL. Especially since his temp was up over 104 by this morning and we now know he has a line infection. Yippee! I know it's one of the risks of having a line, but for jeez sake, he had the one line in for over 6 months without EVER having an infection in it!!!!!!!!!!! AmiDeb in VA wrote: Ami,More prayers for you and yours. I'm so very sorry that has taken another turn for the worse. You have every right to be frustrated. I'd be throwing things by now, if I were you! You are an amazing Mom. Hang in there and know that we're all routing for you!Love,Deb in VA 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, Osteopenia, No Motility http://www.caringbridge.com/visit/seanfox mom to Emma - 12 yrs - Migraines, otherwise healthy stepmom to - 13 yrs - ADD, ODD ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Want to start your own business? Learn how on Yahoo! Small Business. Quote Link to comment Share on other sites More sharing options...
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