Guest guest Posted November 7, 2006 Report Share Posted November 7, 2006 First, he got out of the hospital last week Wednesday after exactly 7 weeks which included the following: Admission ERCP # 14 Pneumatosis Yeast in his PICC line Continued pneumatosis PICC line replaced Enterococcus in stool VRE Pneumatosis resolved Ascending Cholangitis ERCP # 15 Bronchoscopy w/ biopsy Enterococcus, Staphylococcus, (and still) Candida in lungs DEXA scan (follow-up from a year ago) Candida in his stool Finally discharge I had to shave his hair all off because he'd been pulling it out and now has a bald spot. He's been left on TPN. And the doc said they all expect he'll be spending more time in the hospital than out until tx. Also had to have an additional blood pressure med added because his bp's were staying high since the last ERCP. He's also been having pain in his foot/ankle area. Doc is thinking possible avascular necrosis. I'm hoping not, because in a "small" percentage of cases, it can "spread" and get nasty. And this doctor, seeing for the first time, says, "I assume it's the small percents we have to worry about with ?" Boy did he get that one right! LoL. His DEXA showed that his whole body score has improved slightly from a year ago, but his spine score has dropped into Osteoporosis range, as opposed to Osteopenia range. So I suppose with slight improvement in one and slight worsening in the other, that still qualifies him as Osteopenic. The GI nurse coordinator called me and said she got an email from UNOS. They got approval for exception points, and 's PELD score is now 15. Not sure if any of you remember from a number of months ago, but when I put 's absolute WORST labs ever into the PELD calculator, he only got a 4 (when I'd used his current numbers at the time, he got a -1!! I, on the other hand, got a 7, and I'm healthy-ish, no liver disease, anyway.) The nurse wasn't even sure if that was a good score or a bad one. I told her from what I've seen/heard/learned on this group, a 15 is pretty decent. A friend of mine who used to be here at RMH called me one day. (Her son is 2, born w/ short bowel syndrome and albinism, TPN-related LDLT before age 1.) Said her mom called her that morning to tell her that she'd had a dream that (my friend) called her to tell her she was leaving to come to Minneapolis because we got the call for 's liver tx. She looked on the calendar (in her dream) and it was the Saturday after Thanksgiving. So, we'll see. Funny thing is, my husband and I started dating on April 26. My daughter, Emma, was born on December 26. had his lung tx on February 26. If we get the call that Saturday, and he goes into OR after midnight, his liver tx would be November 26. I have another kidney infection. And currently a headache that won't quit. Love to everybody! Ami 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 ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Everyone is raving about the all-new Yahoo! Mail. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2006 Report Share Posted November 7, 2006 What can one say after reading this. It definately qualifies for a legitamate reason for a headache. Hang in there, and lets hope tx will be November 26. Chaim 's exception points First, he got out of the hospital last week Wednesday after exactly 7 weeks which included the following: Admission ERCP # 14 Pneumatosis Yeast in his PICC line Continued pneumatosis PICC line replaced Enterococcus in stool VRE Pneumatosis resolved Ascending Cholangitis ERCP # 15 Bronchoscopy w/ biopsy Enterococcus, Staphylococcus, (and still) Candida in lungs DEXA scan (follow-up from a year ago) Candida in his stool Finally discharge I had to shave his hair all off because he'd been pulling it out and now has a bald spot. He's been left on TPN. And the doc said they all expect he'll be spending more time in the hospital than out until tx. Also had to have an additional blood pressure med added because his bp's were staying high since the last ERCP. He's also been having pain in his foot/ankle area. Doc is thinking possible avascular necrosis. I'm hoping not, because in a "small" percentage of cases, it can "spread" and get nasty. And this doctor, seeing for the first time, says, "I assume it's the small percents we have to worry about with ?" Boy did he get that one right! LoL. His DEXA showed that his whole body score has improved slightly from a year ago, but his spine score has dropped into Osteoporosis range, as opposed to Osteopenia range. So I suppose with slight improvement in one and slight worsening in the other, that still qualifies him as Osteopenic. The GI nurse coordinator called me and said she got an email from UNOS. They got approval for exception points, and 's PELD score is now 15. Not sure if any of you remember from a number of months ago, but when I put 's absolute WORST labs ever into the PELD calculator, he only got a 4 (when I'd used his current numbers at the time, he got a -1!! I, on the other hand, got a 7, and I'm healthy-ish, no liver disease, anyway.) The nurse wasn't even sure if that was a good score or a bad one. I told her from what I've seen/heard/learned on this group, a 15 is pretty decent. A friend of mine who used to be here at RMH called me one day. (Her son is 2, born w/ short bowel syndrome and albinism, TPN-related LDLT before age 1.) Said her mom called her that morning to tell her that she'd had a dream that (my friend) called her to tell her she was leaving to come to Minneapolis because we got the call for 's liver tx. She looked on the calendar (in her dream) and it was the Saturday after Thanksgiving. So, we'll see. Funny thing is, my husband and I started dating on April 26. My daughter, Emma, was born on December 26. had his lung tx on February 26. If we get the call that Saturday, and he goes into OR after midnight, his liver tx would be November 26. I have another kidney infection. And currently a headache that won't quit. Love to everybody! Ami 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 ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Everyone is raving about the all-new Yahoo! Mail. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2006 Report Share Posted November 7, 2006 Ami, Many, many prayers for you and for ...may this truly be the beginning of better things to come for you all! Hope, hope and hugs, Deb in VA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2006 Report Share Posted November 7, 2006 Ami, Many, many prayers for you and for ...may this truly be the beginning of better things to come for you all! Hope, hope and hugs, Deb in VA Quote Link to comment Share on other sites More sharing options...
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