SHE'S AWAKE!

[manofmanycats]

It 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. :) :) :) :) :)

Comments

[murielle]

This is just the BEST news! I'm so, happy. I'm so happy for you all.

God bless her!

*Hugs*

[manofmanycats]

Thanks! It is the super best news. Lex isn't out of the woods yet, but she's awake and alive (well, sleeping right now, but I know I can't!) after one of the closest calls her docs have ever seen. I'm so grateful. I'll pass along your message! Thanks so much! *some hugs back and I'll send some to Lex, too!*

[murielle]

How's our girl doing? Haven't heard anything for a few days. Sending love and hugs and prayers. (((Hugs)))

[manofmanycats]

Hi! Thanks for the kindness. I updated on my journal yesterday: https://manofmanycats.dreamwidth.org/1291.html

I sent an email to Gary asking for him to please update, but I'm sure he's busy. Anyway, I'll be posting on my journal for the next several weeks with updates. For now, she's - on her way home. Not well, but breathing only with portable oxygen, and able to at least walk with a walker. So that's all good news!

Thanks so much for the concern. I appreciate it and I know she will, and I will pass along your love for her! :)

[murielle]

Thank you so much. I'll be sure to check out your jounal. :-)

[adoptedwriter]

Such a relief! Glad for the happy news!

[manofmanycats]

It is a huge relief! And thank you! I will share your awesome words with her tomorrow!

[alycewilson]

I'm so glad to hear that! Tell her when she is able that she needs to listen to Lady Gaga singing the national anthem.

[manofmanycats]

Thanks! I'm really glad as well. And I'm super thrilled for James. He actually is sleeping tonight (he's been getting up a lot, which makes sense, but actually fell asleep at 11 tonight. Kind of amazing for him)! And I will definitely tell her. Toby said she made mention of wanting to watch "the whole thing" (meaning the departure of 45 and the full inauguration), and I've found the full 7-hour event on YouTube, so once she's up to it, I know she'll want to watch it. And I heard Lady Gaga, too, and thought she sounded much more professional than usual. She's come a long way since 2009 when I first heard her. It was really good!

[alycewilson]

Lady Gaga was definitely excellent. My husband was particularly impressed by the fact that she didn't overdo it with runs and the like, which is a tendency of many singers who perform that song. Relistening to it, I realized that she syncopated a lot of the song, but at the time, it felt like a very standard, if accomplished, rendition.

Again, so glad that Lex is coming around.

[manofmanycats]

Totally agree. I mean, I'm not a trained vocalist like Lex is (I sing with her for fun, but I play piano), but Lady Gaga likes to overdo SO MUCH. But the past few years have been more authentic, and she sounds so... like less is more, if that makes sense? So yeah, I agree. And so many singers perform runs and trills with that song so I'm glad she stuck to what it IS, not something it shouldn't have been (even if you're right about the syncopation; a lot of more that came in toward the end, and I remember wondering why she broke up certain phrases, along with the word "land."). I was honestly super impressed with the whole event, though, especially Amanda Gorman's poem. That was one of the highlights!

And thanks - I am too. It's going to take a while, but she'll have six people nearby at all times, and home health care will be here. I think they send in someone who helps with memory care (she's having issues with that) along with someone to train her how to reach for things without falling and all that. So I'm glad she'll be taken care of. We love her but we are NOT medical staff! But we're gonna do all we can.

[wolfden]

This is such good news.

I am so glad to hear that she is awake. I am so glad for James too. This must be a hard thing for a 9 year old especially considering how hard it is for adults.

I hope there continues to be good news.

[manofmanycats]

Thanks! It really is. I'm still on and off again crying, but James has slept through the night (he's 9 so he normally does, but not with Lex being in a coma and all. Tonight has been his first night since Saturday). I'm just so relieved, and I can't imagine what James is feeling. And I know Lex wants to be back with him soon, but she still can't move well, and has to stay in the hospital a bit to recover. But with James knowing he can talk to her now and that she will be back? It's a lot easier on him. Lex's brother and I have been taking care of him these past 2 days, and I'm glad we got to be there when his dad said, "Mommy is awake." It was a huge moment.

I'll definitely update. Lex has been my best friend ever since she moved down here (it's hard to make friends with this pandemic and all, but when she first started building her house before COVID in 2019, she'd come to the coffee place I used to work at all the time, and we became friends since she's a singer and I'm a pianist. Then I left my job, became a house and pet-sitter, and basically work for her family now since they have a super high-maintenance cat). So anyhow, she's one of the best people in my life, and I can't imagine a world without her.

Thanks again for checking in!

[halfshellvenus]

Thanks so much for this update-- the news is SO welcome, and such a relief!

I'm so glad you and her brother are able to be with James right now. Lex needs Toby with her (and he needs to be there for himself), but it's very hard on James. He's had to be such a brave boy, and this is a terrifying situation that is worrying and heartbreaking for everyone.

I'm so glad Lex has family and friends nearby to help her and her family through this. We're all very lucky that she found a friend in you, and I'm sure you (like the rest of us) feel you were the lucky one for finding her. :)

[manofmanycats]

Of course! You're so welcome! Trust me, we are all super relieved. Seeing James today when he heard that his mom was awake? Thinking about it makes me cry. Honestly, and I don't know why I'm being so vulnerable to people on the Internet, I've been crying a lot ever since last Friday. She looked so sick that night, and then, Saturday was terrible - she walked to her parents house for lunch and then just wandered back home like she didn't know what else to do (they live in the same neighborhood so it wasn't dangerous - it was like a quarter of a mile). I think she was in that myxedema psychosis state that she's talked about before. I'm still kind of new to it, so I thought she was just rambling and was maybe confused or switching or something and didn't want to call it out? But then we found her and... yeah. It was the coma thing.

But Nick (Lex's brother) and I are keeping a close eye on James. Lex's parents have been, too, since they live down here half the year. Lex and her parents don't always get along (long stories that you probably know some of? Maybe?) but it made sense for them to go to the ICU Wednesday. They just got home a few hours ago, so Nick and I are trying to keep James happy until he gets to FaceTime Lex. I can't sleep, knowing we'll get to do that in a few hours! But he's been super brave. He is such a mature 9 year old kid, and he's going to grow up to be one of those good kids who helps people because he's been doing that for his mom. She has guilt about it, but Toby has told her a million times that it's not her fault. He is super good for her, and watching them together is just... they really balance each other out. She's so nonstop and aggressive, and he's so calm and passive, so they both kind of know when to step in and say, "Hey, calm down for a sec" or "hey, step up and speak out here." It's nice to see functional marriages (my parents don't have one - hence the house-sitting gigs, ha).

I'm newish to the situation - I met Lex when she and Toby started building their house in 2019 (or planning to build. I don't think they started until April of 2020?). They'd come into the coffee shop I worked in, and with Lex being this superstar singer and me being a pianist, we hit it off. We all hung out until the pandemic, and I ended up taking on pet-sitting/house-sitting gigs - until her parents essentially hired me to be a full-time house-sitter and pet-sitter for their cute but insanely high-strung cat. They live here half the year, so I'm with them, but that means hanging with Lex, Toby, and James since we're now all in the same little COVID family bubble. I adore her (not in a "taking her away from Toby" way because that's wrong and all - though she knows I think she's very beautiful and talented and super-smart - but in a "how can you not love her?" kind of way). So it's been hard watching everyone go through this while still being new and still caring.

But Lex is so lucky (and grateful - my God, she talked about Survivor with me about 870000000 times!) to have her family and friends (real life and online here), and to have her writing and singing. I mean, she walks around singing all the time, and while she has serious bouts of depression, she's always singing about being grateful to be alive. I hope she does know how grateful we are for her!

Thanks so much for being so nice. It's been rough. I'll update this weekend once I talk with her, and I can't wait for James to talk to her as well (it will probably be FaceTime unless she looks too pale or is hooked up to a bunch of stuff still; then, he'll call, but still, it will be so good for him)! :)

[bleodswean]

She IS a survivor. This is such relieving news here, I can't imagine what it must feel like to all of you out there. Give her this for me - HUGS!

[manofmanycats]

She really, truly is! And thank you so much. We've been so worried, but I knew she would want her friends to be updated as well. It's different here than on Twitter. She has like, 5000 people following her there, but doesn't know them. It seems like she knows you all a bit, so it felt right to update. I originally contacted Gary, because I knew Lex would want her friends to know. She loved playing this. She talked strategy to me all the time, and told me about her favorite writers (total spoiler, but you are one of them). She told me she knew that a jury (?) would kick her out, but that she'd keep writing until that happened because she had never made it through without getting sick. And then - something worse than sick happened.

But she is doing better. Not great, but better, and that makes all of us feel some relief for sure! She talked more today, and was able to speak to James, and honestly, well, seeing that made my whole day. They were both just so happy to see each other. She was emotional, James was excited, and he kept talking to her about reptiles and school stuff and just... he was being a normal happy kid again. I'm relieved because I'm sure it's harder on him than on anyone else.

She is still having issues with breathing and temperature regulation, and falls asleep randomly and quickly, so the hospital wants to keep her until that is sorted. But she is breathing, and she finally ate today (that was a huge issue - she hadn't been eating enough, and while we all called her on it, a nutritionist told her she was killing herself, so she has some other stuff to deal with upon returning home). But I think that she will be back next week. That's the hope.

Thanks again for all the kindness. I'll keep updating for certain if you want to check back. I know Lex thinks highly of you and had hoped to reach the end of the game with you! And I will pass along your hug via word for now, and in person when I get to see her again! :)

[flipflop_diva]

Thank you so much for the super detailed update! I was refreshing so much the last few days hoping there would be good news. So I'm really, really happy, for Lex and you and Toby and James and everyone.

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

[manofmanycats]

Oh, of course! Lex would want her friends to know. She really loved playing this game and would talk about strategy and such with me, so I started to learn about it. And she's such a good writer. I'm sad she had to go, though she was convinced people were out to get her. Maybe they were! I don't know much about how this is played, but she had some pretty solid reasons. Still, I think she has real friends here, and that's why Toby asked me to share info here and in private emails, not on places like Twitter or Instagram where people would pretend to care and then never check in again. I totally get that. Plus, I can handle messages and all here, but 5000 Twitter people? Nah. I don't even have a Twitter, ha!

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!)