SHE'S AWAKE!
Jan. 21st, 2021 05:50 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
manofmanycatsIt took about 5 days, but our Lex is awake. She's alive.
I don't know what or how it happened but I'm not going to question it because she is ALIVE!!
Yesterday morning (Wednesday), palliative care and Lex's main ICU doc, as well as her oncologist, discussed the next steps since it had been four days and she wasn't coming through. Her body temperature was still really low. Her oxygen was just as low. Toby agreed that taking her off oxygen and letting nature do it's thing was... you know what I mean. Basically, Friday was going to be it, and if Lex didn't breathe without help, that was what she had requested in her DNR and everyone was ready to honor it. We were all a wreck and her parents were granted clearance to say goodbye this morning. James was NOT allowed to go in (he stayed with me at their house, where I have been this past week) and that experience is not something I can emotionally get into right now because it was hell.
So both her parents and Toby were there this morning, talking to her, reading all of your nice DMs and comments and talking about how cool the inauguration was (it was on TV all day yesterday for her, from like, 6 am to 11 pm) and that we finally have a woman VP, and how Amanda Gorman's poem was like listening to Hamilton (which is something she and I like - we sing it together all the time), and they told her they loved her and that James really just needed his mom - but that if she couldn't and was in too much pain, they weren't mad and understood if she needed to stop fighting.
An hour later (close to noon), she opened her eyes, looked around, and blinked a lot. Toby called the docs in, and Lex was trying to do something with her hands. They took off her oxygen mask (they put those things in her nose instead, the cannulas or whatever?) and she pointed to her throat, indicating she was thirsty. They wouldn't give her water right away before doing a check-up, and she apparently fell asleep several times during the check-up, but she was, indeed, fully out of the coma and her body was just exhausted from trying to, well, keep her alive. They called in an order for physical therapy and occupational therapy, as well as some kind of nutritional therapist.
Her body temp is still very low and she has damage to her body tissue, so she is going to be in the hospital for a bit longer - the hypothermia she is experiencing still isn't gone, so she's not 100% out of the woods yet with her breathing issues. Her face, according to Toby, is very pale and her lips are very blue. She'll be on oxygen once she returns home and will have daily home health care for things like walking, eating, and all that. She also can't swallow well.
But SHE IS AWAKE. And she's said two things. "I missed James's birthday?" (It was back in October, but I guess she is pretty confused right now. Toby said she's been crying a lot because she can't remember basic things like dates and all, and then just randomly cries, but I'm guessing that's normal after waking up?) - that was one of them. But Toby said it had only been 4-5 days and he was nine, just like he was before she got very sick. She also remembered (or heard - I'm convinced she heard messages and the inauguration on TV yesterday and all, she HAD to have heard something) that Trump was gone and said, "Did they pass bills?" I don't know what Toby said about that, because I know she's confused and trying to catch up, but her doctors said that this isn't dissimilar to her TBI - information overload would be too stressful for her. She is having a very hard time recalling basic info, didn't recognize her dad at all, and may have some brain damage. Obviously, it's clear to ME that her brain is working, but it may not be at 100%. But I don't know.
Anyhow, Toby is going to give her her phone soon enough so she can say hi, but that may not be until tomorrow or Saturday. She's not said much or asked about it. He and her family are mostly just letting the docs do their thing and giving her brief updates about how she is, how her friends all are, what James is doing (he is allowed to FaceTime her tomorrow, FINALLY, as long as she is okay tonight!), and good news from around the world. She is still sleeping a lot, and has the cannulas up her nose, but her oncologist said that she thinks the worst is over and that Lex SHOULD come home at some point next week.
So - cautiously optimistic, but she is AWAKE! If she can get through the next 48 hours, that will be the real test. I'm going to talk to her tomorrow when James does (since I'm here with him; her parents are staying at UMMC. Her brother is here with me as well. We're all in the same COVID family bubble, so, I promise we're being safe so no one can get sick and then spread it back to Lex). I'll have more news then about her condition and what the docs/PT/OT say. We're hoping her brain can recover since she's had that serious TBI in the past, and that she won't require any surgeries involving her tissue (one of her toes may be amputated, which would mean using a cane permanently).
But it's good news. She's awake, she's alive, she's made some indication that she knows who she is, she knows she has a son, and I'm just - honestly? Crying. I've been crying since I heard. James is crying, too, so her brother is picking up some pizza and wings from a local place that does curbside and we're going to have a celebration to cheer up James. We've been trying to do things to make life fun for him, but it's been so hard. Now that he knows his mom is awake, though, he's anxious to talk to her, so we have to distract him until tomorrow morning after Lex is assessed. But he is SUCH a good kid. Seriously. He even asked ME if I was okay at one point. I'm almost 30 and he asked ME. Like, what a great kid. He deserves a mom as awesome as Lex.
I'm so glad she's awake. Thank you all for the messages, comments, concern, and love. I know it helped. I KNOW she somehow heard it. We are all so grateful.
I'll update as soon as I know more. Please feel free to add me here - I want to try my hand at writing more, and friends are good! But I'll try to post this through Gary so her online DW friends can see it, and I'll let Toby share the news on Twitter. :) :) :) :) :)
I don't know what or how it happened but I'm not going to question it because she is ALIVE!!
Yesterday morning (Wednesday), palliative care and Lex's main ICU doc, as well as her oncologist, discussed the next steps since it had been four days and she wasn't coming through. Her body temperature was still really low. Her oxygen was just as low. Toby agreed that taking her off oxygen and letting nature do it's thing was... you know what I mean. Basically, Friday was going to be it, and if Lex didn't breathe without help, that was what she had requested in her DNR and everyone was ready to honor it. We were all a wreck and her parents were granted clearance to say goodbye this morning. James was NOT allowed to go in (he stayed with me at their house, where I have been this past week) and that experience is not something I can emotionally get into right now because it was hell.
So both her parents and Toby were there this morning, talking to her, reading all of your nice DMs and comments and talking about how cool the inauguration was (it was on TV all day yesterday for her, from like, 6 am to 11 pm) and that we finally have a woman VP, and how Amanda Gorman's poem was like listening to Hamilton (which is something she and I like - we sing it together all the time), and they told her they loved her and that James really just needed his mom - but that if she couldn't and was in too much pain, they weren't mad and understood if she needed to stop fighting.
An hour later (close to noon), she opened her eyes, looked around, and blinked a lot. Toby called the docs in, and Lex was trying to do something with her hands. They took off her oxygen mask (they put those things in her nose instead, the cannulas or whatever?) and she pointed to her throat, indicating she was thirsty. They wouldn't give her water right away before doing a check-up, and she apparently fell asleep several times during the check-up, but she was, indeed, fully out of the coma and her body was just exhausted from trying to, well, keep her alive. They called in an order for physical therapy and occupational therapy, as well as some kind of nutritional therapist.
Her body temp is still very low and she has damage to her body tissue, so she is going to be in the hospital for a bit longer - the hypothermia she is experiencing still isn't gone, so she's not 100% out of the woods yet with her breathing issues. Her face, according to Toby, is very pale and her lips are very blue. She'll be on oxygen once she returns home and will have daily home health care for things like walking, eating, and all that. She also can't swallow well.
But SHE IS AWAKE. And she's said two things. "I missed James's birthday?" (It was back in October, but I guess she is pretty confused right now. Toby said she's been crying a lot because she can't remember basic things like dates and all, and then just randomly cries, but I'm guessing that's normal after waking up?) - that was one of them. But Toby said it had only been 4-5 days and he was nine, just like he was before she got very sick. She also remembered (or heard - I'm convinced she heard messages and the inauguration on TV yesterday and all, she HAD to have heard something) that Trump was gone and said, "Did they pass bills?" I don't know what Toby said about that, because I know she's confused and trying to catch up, but her doctors said that this isn't dissimilar to her TBI - information overload would be too stressful for her. She is having a very hard time recalling basic info, didn't recognize her dad at all, and may have some brain damage. Obviously, it's clear to ME that her brain is working, but it may not be at 100%. But I don't know.
Anyhow, Toby is going to give her her phone soon enough so she can say hi, but that may not be until tomorrow or Saturday. She's not said much or asked about it. He and her family are mostly just letting the docs do their thing and giving her brief updates about how she is, how her friends all are, what James is doing (he is allowed to FaceTime her tomorrow, FINALLY, as long as she is okay tonight!), and good news from around the world. She is still sleeping a lot, and has the cannulas up her nose, but her oncologist said that she thinks the worst is over and that Lex SHOULD come home at some point next week.
So - cautiously optimistic, but she is AWAKE! If she can get through the next 48 hours, that will be the real test. I'm going to talk to her tomorrow when James does (since I'm here with him; her parents are staying at UMMC. Her brother is here with me as well. We're all in the same COVID family bubble, so, I promise we're being safe so no one can get sick and then spread it back to Lex). I'll have more news then about her condition and what the docs/PT/OT say. We're hoping her brain can recover since she's had that serious TBI in the past, and that she won't require any surgeries involving her tissue (one of her toes may be amputated, which would mean using a cane permanently).
But it's good news. She's awake, she's alive, she's made some indication that she knows who she is, she knows she has a son, and I'm just - honestly? Crying. I've been crying since I heard. James is crying, too, so her brother is picking up some pizza and wings from a local place that does curbside and we're going to have a celebration to cheer up James. We've been trying to do things to make life fun for him, but it's been so hard. Now that he knows his mom is awake, though, he's anxious to talk to her, so we have to distract him until tomorrow morning after Lex is assessed. But he is SUCH a good kid. Seriously. He even asked ME if I was okay at one point. I'm almost 30 and he asked ME. Like, what a great kid. He deserves a mom as awesome as Lex.
I'm so glad she's awake. Thank you all for the messages, comments, concern, and love. I know it helped. I KNOW she somehow heard it. We are all so grateful.
I'll update as soon as I know more. Please feel free to add me here - I want to try my hand at writing more, and friends are good! But I'll try to post this through Gary so her online DW friends can see it, and I'll let Toby share the news on Twitter. :) :) :) :) :)
no subject
Date: 2021-01-22 07:26 pm (UTC)I hope James got to talk to her this morning. Poor little guy. I can't even imagine how hard this must all be for him <3
no subject
Date: 2021-01-23 01:20 am (UTC)But it's good news for sure. She's awake and breathing, though has a very hard time staying awake or taking deep breaths. Her lungs are not functioning well, and she's dealing with the fallout of hypothermia. So there's a way to go, but she has docs with her basically 24/7 (which probably wears her out, too). And she'll have home health care when she returns home, which we hope is next week.
James was super happy to talk to Lex this morning. That kid adores her so much. He literally just sits around and watches her when she sings sometimes. They have a real bond, and he was shattered to think she might not come home. So he's better now, and he slept last night (I mean, he's 9, so he sleeps just fine, but he slept without crying) and I'm sure he'll sleep tonight. Lex's brother and I have been keeping an eye on him and just letting him have a good time with playing video games, playing board games, telling stories, and doing fun stuff. It's been a rough week. He is a strong kid. He's his mom's kid for SURE. :)
Thanks for checking in, and for your message the other day. Lex really likes you. I'll make sure to pass along that you commented again. She had told me how close she was to most of the people in the DW game, and you were one of those people. I promise to keep writing here until she is ready to take over here (or on IG and Twitter) and update. :) (And then, I'll probably keep writing here because it is a good outlet, and I'll be around while Lex recovers so Toby can work, so... I'll keep updating and just talking about stuff!)