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Update on Lex
Jan. 24th, 2021 04:52 amI'm kinda tired, so I'm going to run through what I know quickly:
-James and I talked to Lex on FaceTime Friday (and again today), and that kid was SO RELIEVED to see and hear his mom. We were all crying. But then James was chatting normally with her about lizards and pizza and schoolwork he promised he was doing, so once he realized she was responsive... I mean, I don't think everything is totally fine, but he's relieved, and I'm relieved to see him this much calmer.
-Lex had a hard time talking, so she did a lot of nodding or saying "yes" or "no" (and she did make a few jokes). She looked like herself, except for exceptionally pale, and her lips are ringed with a deep blue line... like if someone took a navy Sharpie and drew a line around her lips. With myxedema comas, that's not uncommon, but this is way more noticeable. But she wasn't "scary" (if she looked VERY ill, we wouldn't have done FaceTime is what I mean), and just looked exhausted and like someone beat her up a bit. There are really weird blue marks under her eyes and across her cheeks, too, and her face and neck and puffed up from the steroids she's been on for a week now, but I don't know what the blue marks are about. I wasn't concerned. I'm just pointing out what I saw. But she is still Lex, and smiled when she saw James.
-There's no word on when she's coming home. She finally updated her Insta today, but very vaguely (I think she probably dictated something to Toby, because the post didn't sound like her); I don't think she knows what to say, and this has been traumatic for a lot of people, including her. So she mentioned being ill and let it go. It's probably a wise move; I don't think she wants sympathy as much as normalcy (or something extremely amazing or noteworthy, knowing her).
-Toby did say that insurance is "eager" to get her out of UMMC as soon as possible, which isn't the first time they've let her go early. But "early" may be on time, because we don't know yet when she'll be ready. She has an entire team of docs working on getting her "ready," and home health care is being set up. But I hope they don't let her go early. Last time that happened, Toby told me she ended up back in the ICU and then CCU for two weeks. And it's already been one long damn week as it is.
-But when she does come home, insurance seems to have no issue paying for home health care. Someone will be here for labs, monitoring her oxygen (she'll be on oxygen for a bit), monitoring her temperature, and helping her around the house. She is having some memory issues and issues with typing coherently, so... I just hope that can pass for her. Remembering lyrics, and writing music, and writing here or writing her novels? I don't want her to lose that because her brain was literally iced out and deprived of oxygen. :(
-We're all hanging in, so thanks for the nice comments for all of us. Her brother and his wife are back at their house now that Lex's parents have returned home (her parents had negative COVID tests so they could leave UMMC and return back here safely). James is spending most of his time with them, and some of his time with me. Toby is still at the hospital and appreciates all the comments. Lex's mom said she has read a few emails and is very grateful, and will do her best to reply. We're all really grateful for the kindness here. :)
-In good news, Lex was awake for four hours straight Saturday, which is really great news. And the hypothermia luckily has not resulted in any amputations, which is what docs were worried about, so that is also really great.
-In bad news, she's having issues swallowing, so her meals are mostly liquid right now. Before that, she wasn't eating much at all, and she's looking... bony (steroid puffiness aside, because they have her on a steady IV of steroids for her heart). She's struggled with eating disorders her whole life, but I don't think we knew how severe things were between Thanksgiving and the ICU stay. She's seeing a staff psych 30 minutes a day, which started yesterday, and luckily (for those of you who know about her other conditions and all), the psych knows a lot about DID, so Lex doesn't feel... well, in the past, docs have told her that her alters wanted her dead and sick, and that helped nothing. This doc isn't doing that, and is educated about her DID and when it came to be, so that's the good news in the bad. I wish I had known she wasn't eating, though. I thought I saw her eat enough, but I should have paid more attention.
-I'm tired, but Lex is still, well, surviving this. She smiled on FaceTime a few times, made a few little jokes when she did talk, and I'm just glad she came through. We all KNOW she's a fighter, but this was really touch and go. I'm so scared it could happen again. I can't imagine how Toby or James feel. Worse, I can't imagine how much that scares Lex.
-OH, quickly: I talked to her a bit more about the writing competition results and the tribal thing (sorry, I am so new, ha) and she said she was happy for everyone but sad she wasn't playing and "had no way to help" (whatever that means... it was vague). Then she said, "They don't miss me. They were going to kick me out because of votes. I wanted to write things." And then she was all emotional about it. I know she rationally knows it's just a game and that ACTUALLY SURVIVING matters 100% more (and that people aren't mean enough to just kick out someone good because they can, unless that is the game?), but she was sad. I think it's all just been a lot. But anyway, she does miss everyone and misses playing and I am falling asleep here, so... more when I can. I just wanted to pass along what I know. :)
-James and I talked to Lex on FaceTime Friday (and again today), and that kid was SO RELIEVED to see and hear his mom. We were all crying. But then James was chatting normally with her about lizards and pizza and schoolwork he promised he was doing, so once he realized she was responsive... I mean, I don't think everything is totally fine, but he's relieved, and I'm relieved to see him this much calmer.
-Lex had a hard time talking, so she did a lot of nodding or saying "yes" or "no" (and she did make a few jokes). She looked like herself, except for exceptionally pale, and her lips are ringed with a deep blue line... like if someone took a navy Sharpie and drew a line around her lips. With myxedema comas, that's not uncommon, but this is way more noticeable. But she wasn't "scary" (if she looked VERY ill, we wouldn't have done FaceTime is what I mean), and just looked exhausted and like someone beat her up a bit. There are really weird blue marks under her eyes and across her cheeks, too, and her face and neck and puffed up from the steroids she's been on for a week now, but I don't know what the blue marks are about. I wasn't concerned. I'm just pointing out what I saw. But she is still Lex, and smiled when she saw James.
-There's no word on when she's coming home. She finally updated her Insta today, but very vaguely (I think she probably dictated something to Toby, because the post didn't sound like her); I don't think she knows what to say, and this has been traumatic for a lot of people, including her. So she mentioned being ill and let it go. It's probably a wise move; I don't think she wants sympathy as much as normalcy (or something extremely amazing or noteworthy, knowing her).
-Toby did say that insurance is "eager" to get her out of UMMC as soon as possible, which isn't the first time they've let her go early. But "early" may be on time, because we don't know yet when she'll be ready. She has an entire team of docs working on getting her "ready," and home health care is being set up. But I hope they don't let her go early. Last time that happened, Toby told me she ended up back in the ICU and then CCU for two weeks. And it's already been one long damn week as it is.
-But when she does come home, insurance seems to have no issue paying for home health care. Someone will be here for labs, monitoring her oxygen (she'll be on oxygen for a bit), monitoring her temperature, and helping her around the house. She is having some memory issues and issues with typing coherently, so... I just hope that can pass for her. Remembering lyrics, and writing music, and writing here or writing her novels? I don't want her to lose that because her brain was literally iced out and deprived of oxygen. :(
-We're all hanging in, so thanks for the nice comments for all of us. Her brother and his wife are back at their house now that Lex's parents have returned home (her parents had negative COVID tests so they could leave UMMC and return back here safely). James is spending most of his time with them, and some of his time with me. Toby is still at the hospital and appreciates all the comments. Lex's mom said she has read a few emails and is very grateful, and will do her best to reply. We're all really grateful for the kindness here. :)
-In good news, Lex was awake for four hours straight Saturday, which is really great news. And the hypothermia luckily has not resulted in any amputations, which is what docs were worried about, so that is also really great.
-In bad news, she's having issues swallowing, so her meals are mostly liquid right now. Before that, she wasn't eating much at all, and she's looking... bony (steroid puffiness aside, because they have her on a steady IV of steroids for her heart). She's struggled with eating disorders her whole life, but I don't think we knew how severe things were between Thanksgiving and the ICU stay. She's seeing a staff psych 30 minutes a day, which started yesterday, and luckily (for those of you who know about her other conditions and all), the psych knows a lot about DID, so Lex doesn't feel... well, in the past, docs have told her that her alters wanted her dead and sick, and that helped nothing. This doc isn't doing that, and is educated about her DID and when it came to be, so that's the good news in the bad. I wish I had known she wasn't eating, though. I thought I saw her eat enough, but I should have paid more attention.
-I'm tired, but Lex is still, well, surviving this. She smiled on FaceTime a few times, made a few little jokes when she did talk, and I'm just glad she came through. We all KNOW she's a fighter, but this was really touch and go. I'm so scared it could happen again. I can't imagine how Toby or James feel. Worse, I can't imagine how much that scares Lex.
-OH, quickly: I talked to her a bit more about the writing competition results and the tribal thing (sorry, I am so new, ha) and she said she was happy for everyone but sad she wasn't playing and "had no way to help" (whatever that means... it was vague). Then she said, "They don't miss me. They were going to kick me out because of votes. I wanted to write things." And then she was all emotional about it. I know she rationally knows it's just a game and that ACTUALLY SURVIVING matters 100% more (and that people aren't mean enough to just kick out someone good because they can, unless that is the game?), but she was sad. I think it's all just been a lot. But anyway, she does miss everyone and misses playing and I am falling asleep here, so... more when I can. I just wanted to pass along what I know. :)
