Vlogging with EDS: Intubation Complications - Coughing up Blood and a Failed Surgery | Week 67

[@Mauchoxen]

I cannot believe that someone would actually suggest that you have a spine surgery awake. Hearing you speak about it as if it's not a completely insane idea speaks levels of how much pain you're used to and how much you're willing to go through. I hope you get a more reasonable anesthesiologist next time. Sending you strength, although you clearly have so much already

[@chroniclesofabrokenperson2600]

You are my hero! I was freaking out yesterday because of new symptoms from my neck. I almost passed out. I have to sit upright with my head against something firm and my chin slightly up or my Nadal passages close off, I get very light headed, I can barely keep my eyes open, and I feel pretty bad in general. As soon as I get back in that position I feel better within minutes. That's on top of a lot of other symptoms. My neurosurgeon has been out of the office for a couple of weeks and returned yesterday. He still needs to read my upright imaging. So, watching what you go through and the symptoms you are having really put things in perspective for me. I'm praying for you as you go through your surgery and recovery. I'm heading over to your Instagram to see how it's going!

[@miracle84]

You look like a superhero in the montage at the beginning!

[@meganer12]

Once again, I love your sense of humor; “I should be glowing by now!” Yikes for needing to pay out of pocket for a dr visit, that’s pretty ridiculous that they didn’t inform you ahead of time. I’m so upset for you that the surgery couldn’t happen this week, I hope the healing for your throat (etc) is fast and next week’s attempt goes smoothly. ❤️ I’m glad the imaging will give a better plan for your new surgery appointment. I absolutely agree with you that I wouldn’t want to do that surgery awake, what a butthead the anesthesiologist was that he wouldn’t give you other options. Yesss, phoebe’s sexy sick voice reference. I used to have to get CT scans of my abdomen when I was a kid (yay cancer) and they told me the contrast would taste like kool-aid...those liars. I don’t remember much anymore, but I remember being a sassy kid and saying it tasted like vomit flavored kool-aid lol.

[@grayskindablue]

I swear you’re so positive every vlog I just want to shake you and be like “be ANGRY! None of this is FAIR! Being sick SUCKS!” I’m super sorry they aborted your surgery. I can’t imagine waking up coughing blood and hearing that. Please focus on healing. Sending you lots of good vibes and wishing you the very best for tomorrow. Off to check your Instagram. -a fellow spoonie

[@renyputman7118]

Skyler Gray Trust me, we do do that! It's jus not something we show to a lot of people. My best friend and I both have health problems and once every week we have a session of blowing off steam. We just cry and tell each other the frustrations we have! Crying is a good thing, it's a big relieve to cry and let t all out. Moments like that help us sta positive, we also learn to enjoy little things😍😊

[@LifewithErin777]

Oh no, I wish you could catch a break

[@laurenallison9391]

Erin'sx World right? It’s not fair to her :(

[@LifewithErin777]

Lauren Allison what’s not fair?

[@Richrags99]

May God watch over you. You are an amazing woman. The strength you exhibit is mind boggling. You are so intelligent and well informed of your condition. There may be some rough spots you are going through, but the path you are on will lead to a wonderful future filled with promise and hope. You've got this Christina !!!

[@BeverleyButterfly]

First of all in the beginning you looked like black widow or Wonder Woman getting ready for battle, very cool! Secondly though I’m sorry the surgery didn’t happen and that you were in so much pain from it...but, I agree I think it was for a reason now they have better imaging and maybe a better plan for sedating and incubating you will make everything be better. Plus don’t worry about your knee surgery you will find a way to do it this time and then they will know for your knee. Also if you need to take time off vlogging we would always understand, keeping you in my prayers and sending lots of love your way xxx

[@chchmom]

Praying for you Sweetheart! I admire your upbeat spirit and your unwavering faith. You are an inspiration to all people who are battling something in their lives.

[@tylerbennett4908]

Again is a word that vexes me. Also ‘this is my life now’ and the fear of what’s to come. Today I spent many hours trying to get ahold of neurology so they could give me a drug that they suggested and was in the visit summary but didn’t make it to my IVIG order. Thank you for sharing your journey, it makes a difference to me. You’re the hospital bracelet queen! Sending all the love and rainbows 🌈🌈🌈

[@phoebebrunt5971]

I’m so sorry that you had to go through all this. It sounds like torture, and all without getting the procedure done. You are so strong, and I’ve really hoping that things have worked this time. You so deserve some good things to come along ❤️

[@penelopepolinsneemeyer4757]

I’m so sorry that you’ve had such a challenging week, cariad. Let’s hope and pray that tomorrow goes smoothly for you xxxxxxxxxxxxxxx

[@ingak3963]

I wish you all the best for surgery!!!And I'm excited for your vlog after the successfull surgery! I love how you don't see vlogging as a burden like many big youtubers seem to do. They just take a few days off when they are stressed or they have a big event because they few vlogging as a job. But you are the real hero, you vlog your allergic reactions, your surgery, your joint pain and I really really appreciate it and I also think it helps you cope with everything if you have us to talk to. You really keep us in the loop and it feels like we are a part of your team and like you're a part of our team. (Of course it's fine if you take a few days or weeks off of vlogging if you ever feel like it.) Keep up the great energy and have a good surgery!!!

[@HS-uc7sk]

Hi Christina, I just wanted to say that you and your unpredictable and unfair health are in my prayers. You must must must MUST do something enjoyable and special when your intense symptoms and immediate problems die down. Something to help you feel better and more human. I feel like you never catch a break. God bless you sweetheart 😊😊😊😘

[@nettieclouse9750]

So sorry you had to go through that... Still praying they are able to get it together and a great plan will result in a much easier intabation. Your mom is awesome and it sure does you well to have her to advocate for you! I got a chuckle out of your "collection of bracelets" guess if you can't have your usual bracelets then pile on the medical ones! O and the opening where you are putting on all of the braces and supports was great! Sometimes folks just don't know or understand how much of an effort it is! Lol if only folks knew what we wear under our clothing or as clothing then maybe they would have more compassion or try to be more understanding!

[@Sakire1]

I don’t comment a lot but I’m a faithful viewer. I’m sorry it was a failed surgery, sweetheart. I feel like I know you. I feel so proud of you and your strength. Been praying for you. Happy Valentine’s Day!

[@rosanelagarcia7831]

The best thing for your airway is to do an awake intubation where they use fiberoptics to place the tube under very light sedation while you are still breathing. Good luck hun !!

[@BNHAalltheway]

So sorry this happened praying that everything will work out You are so strong God is with You

[@DaizLittleDancer]

Hey Christina, I just had spinal cord surgery only sedated and woken up mid-way (on purpose) and it was nowhere near as bad as I expected, you’ve got this!

[@copingwithbehcets6947]

My nose is throbbing because I woke up with a tube in it unexpectedly once, and it was not pleasant! Glad that you're doing better now!

[@MamaWithAFro]

I'm so sorry this happened. Your mom is great! I'm so glad you have her and I hope she feels the love from us too!

[@chronicinokla]

Just wanted to let you know that you inspire me to try harder in my day to day. Thank you. Praying for you and your doctor's

[@dawnkeith4444]

I am still praying for you and I wish you the best. Give your mom a hug bc she is such a great person.

[@tbgwb]

Love you so much Christina. I hope this week is much better xx

[@laurenallison9391]

So I was in a car accident (got banged by an SUV with my mom from behind) and I already have a bad back/posture from Scoliosis- so my back/neck have always given me headaches, issues, pain, snapping, etc + I have horrible sinuses so I get headaches/etc and I deal with bad asthma too (mild to moderate). Anyways, my back/neck is very painful today and all I have to say is *THANK YOY GOD* because I can’t even imagine what you go through Christine! What you and Mary Frey both go through is just... it’s NOT fair and you both don’t deserve to live a life so full of pain and such! You both are so damn STRONG and such warriors and you both inspire me so very much! If I could steal both your pains... I would! I wish I could take half the problems at least from you! You’re both so beautifullll and both your strengths prove to be amazing. People like you deserve awards and just... GOOD health. It makes me so mad that such bad humans in this world get away with good health and beautiful souls like you suffer😪. Just know Christine (and Mary) I’m rooting for you both! We your fans are IN your corner and know we send all the love, HEALTH, and well wishes both your way! All my love strong 💪🏼 girl🙏🏼🙏🏼. Give it “HELL” and you keep advocating for yourself to that Dr... you KNOW your body and how you are!!!! Xoxoxo♥️♥️

[@amberyingling840]

I'm so sorry you had yet ANOTHER complication, you handle things so well it's amazing. I had trouble with my last intubation, they did get it but it was rough, they damaged my vocal cords and I lost my voice for 5 months. They were concerned it was permanent, which was terrifying, but thankfully my voice finally did come back. Will be praying praying praying you can get things taken care next week! Can't believe they are considering possibly having you awake, that's just shocking!!! Lol! Hospital bracelets! Got a love how they accumulate...

[@highhopes151]

I am so sorry to hear that surgery was cancelled cause they couldn't interbate you and now you have got a really bad sore throat. I have been praying for you and your family. I will be keeping you in my thoughts and prayers that they will be able to do the surgery this week and that everything goes smoothly and they can sort out whatever is going on with your neck/back I will be praying for you so much that this time it will all go well. Please take care and God bless you all lot's of love from me kelli xxxxxx

[@-------8019]

God bless you and your amazing momma!!! Prayers of protection and a hedge of peace!!!

[@carolynwilson2183]

So sorry to hear. Praying for you and all that you are facing.

[@Not_a_snake]

I’ve had enough CT scans to be the three eyed fish from the Simpsons. Not much I can do for it.

[@scarecrowmax1192]

I sincerely hope that the attempt this week goes better and that hopefully there might possibly be a change in anesthesiologist. I'm sending my love and sending hopes for a speedy recovery, both for your airway and the eventual surgery. Love and spoons

[@neen42]

Wow. You have more patience and grace than I will ever have. I hope surgery tomorrow goes well - you'll be in my thoughts ❤

[@auntdave180]

So sorry you have to reschedule for next week. Several years ago I refluxed just as they sedated me. It was a procedure usually done with light anesthesia. We had to reschedule for the next week and I had to be intubated. Over the next two years I had six surgeries normally done under light sedation that I had to explain why they had to intubate and use full anesthesia. Fortunately, most were at the same hospital and they could access the previous records. Hope things go better this week. Hugs and prayers. 🐾💖🐾💖🐾

[@kirak9448]

I love watching your videos. I was looking for your new video, and got excited to see it was up. Crappy joints suck, but we have to stick together. Let hope the new plan goes well and things happen for you.

[@HeyyBrey]

I don’t know if you get super loopy on satiation. But prepping yourself mentally before you go in might help you keep from panicking if you were to become more conscious. Ask the doctors exactly what’s going to happen, then repeat it in your mind over and over again as they start to sedate you. Hopefully you will stay asleep the whole time, but if you wake, hopefully your brain will remember what’s happening and you can remain calm. This has helped me with a few of my surgeries. You are in my thoughts and prayers!!

[@TeddyCrochet]

Oh Christinia I don't know where to start but I'm praying for you. So sorry you're going thru all this!

[@Stress-relief-insights]

Oh sweetheart, I'm so sorry it's been such a rough time for you.... EDS sucks hun! & the complications from your fusion are making things really trick for surgery! I'm really praying the next one goes well. I love your videos & look forward to them so much. Love your EDS sister Nicole from New Zealand xoxo

[@quiettimegaming3642]

I wish I could find a lady as cool, beautiful, and kind as Christina... Has anyone ever been as awesome as her? She is undoubtedly #1 BestGirl Bae for life.

[@darkbluematter1753]

I remember the bloody nose, coughing up blood after a crappy intubation-you feel so beat up afterwards. Very sorry you had to go through that. I really really hope the next attempt is successful. 🙏💜 PS-I loved the intro clip of you “suiting up” with the music. Action hero Christina-ready to conquer the day and crochet a stylish pair of fingerless gloves! 😁

[@lisawierzbicki4994]

Goodness, you still managed to get last week’svlog up! We’re all praying for you, Christina! Keep leaning on the Lord...He is our strength!

[@itskiizzababy]

Girl, when are you going to get a break?! I really hope you're able to have both of your surgeries over and done with soon, and then you have a good run, at least for a little while! You deserve everything good in the world. I honestly don't know how you stay so positive, you're amazing!

[@jenng3649]

Lots of love and prayers from Annapolis, MD ❤️

[@jessd956]

Love you Christina! Best wishes tomorrow! XO

[@Steuben1978]

I have cervical instability and can somewhat relate to what you are going through. My symptoms are terrible but you have it much worse. Its so damn hard to find doctors that know that this is even a thing. Here in germany most people with this disease get labled psychosomatic very often, because normal MRI doesnt show anything wrong. Only since i got an upright MRI in january this year i know what my problems are. Unfortunatly there is no real treatment except Fusion of c1 c2. And i still have no official diagnosis, which i would need to even have chance for disability payments. I still work full time and its getting harder every day.

[@loiscassels8966]

❤️ You are so strong, so sweet, so brave, so amazing. ❤️

[@lauraelisee]

Feel better Christina!

[@sayurimei]

Take care Christina, I feel next time hopefully will be the charm

[@sueturtle1]

I wish you had better luck i so sorry as god always has a plan

[@astiasti7110]

Thinking of you!

[@pkendlers]

Argh - to go through all that, and not have the surgery you went in for is disappointing. But, the airway issue is a very important one to address! I hope you and your Mom have a mentally restful week. I don't know if you do meditation, but this would be a good time to bust it out and give it a go. :)

[@cocolions]

Could you do an epidural for your knee surgery?

[@renyputman7118]

CC S I'm not a medical professional in any way but I don't think that will be easy because of the fusion

[@cocolions]

Reny Putman yeah, that is what I thought aswell...

[@monicadahlin]

I’m sending you all my love from a very snowy Sweden.

[@sunglassesgirl]

CC S -- I'm guessing that Christina, her medical team, and her family might not be thinking quite that far ahead, yet, and again, _not a medical professional but most definitely a 'medical nerd'_ =) ... I actually a read something last week that made reference to using an epidural and "twilight sedation" for a total knee replacement. Since whatever was used in the nerve block in her cervical spine was effective for a significant amount of time, I'm guessing it might work in a different spot? And the knee surgeons might also do spinal fusions on scoliosis patients, so they might have a good working relationship with an anesthesia team that is comfortable working with fusions... only time will tell which sedation option(s) is most feasible and least risky.

[@cocolions]

Sunglasses Girl I am a premed and fellow zebra with 6 knee surgeries myself and you are better informed ;) I hope they find a possibility with avoiding intubation and I think, even with a spinal fusion, if the team has a bit of experience it should be possible.

[@xlipsyalicex]

when you talked about feeling like you were radioactive i got the song radioactive by imagine dragons stuck in my head - update its still there LOL sorry surgery things didnt go to pan that sucks :(

[@Joy.Elizabeth]

I'm so sorry!!! There's nothing worse then getting all through the waiting and everything hooked up n then something preventing the surgery :( esp what u went through!! I'm praying so much that the anesthesia team had answers for u today n came up w a good plan so u can get through this not having that happen again!! I really feel for u bc I'm going through somewhat similar (though for diff reasons n surgeries) things n I met w my surgeon today n it's just too dangerous for my surgery but trying to get to a safe range has been so tricky bc of all my other illnesses! My Dr todday cld me a Trainwreck lol n I am! I know it. It's so hard! So my heart really feels for u n pls know ur always in my prayers!! ❤️❤️ I'm going to share ur page again on my fb page bc u are too amazing not to have a million subscribers lol seriously you are so strong and have an amazing attitude n really inspire n encourage me so much!! Sending prayers n spoons!! 💜❤️

[@jeanspeer4053]

Oh my I'm so sorry 😐.

[@livewellwitheds6885]

I keep an itemized medical binder its so useful

[@adrianac.9405]

I just read the description. I watch The Frey Life too! Ollie boy is cute Sammy (aka your dog) is cuter though.

[@sunglassesgirl]

I think you have the right attitude about the whole 'aborted surgery' situation, Christina. =) Your are probably right in that it was for the better because your surgery team will some additional knowledge and insight for attempt #2 that they didn't have initially. That small problem probably prevented a bigger one... it's so cliche, and I think you said it in your vlog... everything happens for a reason. But you are entitled to your opinion about what you think actually happened, what should have happened, and why what should have happened was NOT what actually happened. That's not necessarily something to broadcast on the Internet, though. It's also 100% okay if you spent an afternoon... or even an entire week, for that matter... hiding under the covers, being angry, and watching movies. And yes, I am (unfortunately) speaking from personal experience. I had a major surgery, in close proximity to my central nervous system, aborted when I was 11 years old over 'head lice that wasn't actually head lice'. A few years later, I would find out that the surgeon had shown up to the hospital that morning appearing a bit "hung over". I don't think anyone made any attempts to cancel my surgery -- not my parents, not the hospital staff, not the OR staff -- so I feel very lucky that he made the 'head lice mistake'. Looking back years later, I realize that the 'head lice mistake' might have saved my life.

[@kaylabarnes]

I remember that vlog.

[@ecologist_to_be]

Hopefully you can have a different an anesthesiologist as he doesn't sound ideal as he's basically saying it your fault you'll just have to suffer if wake up!

[@SweetPea112]

I just paused the video at the 8:00 mark because you said that they took you off of your blood thinners to prepare for surgery, so forgive me if this is answered later in the video. I just saw my Hemo today and I take Xarelto. I do not have to bridge with Lovenox for a procedure on 3/1/18. I was totally prepared to stop Xarelto and begin Lovenox injections. I will be stopping Xarelto on 2/21/18. And there is no need to bridge to something that stays in my body for less time. Is it because you already use an injectable blood thinner that they couldn't bridge you until your surgery date? I hate that you had to go through that, but I'll be in the same boat beginning 2/21 so at least I've got a heads up that I may be feeling bad. I've never gone longer than 3 days without my blood thinner! Kinda scary!

[@reids97]

I'm so sorry you couldn't have the surgery yet. :(

[@hannahdial3278]

What kind of sling is that? I have EDS too and my shoulder won't stay in socket.

[@poppycopper1]

When I stop my blood thinner I have to have heparin injections so I don’t have a stroke , I have protein C deficiency which means I clot a lot. But I’m luck I don’t feel sick when I’m off my thinners. Hugs xxx

[@neko4169]

幸運を祈ります

[@tomato9431]

I love your videos💕I have EDS, POTS, GI issues , +more lol. But your videos help me a lot, I watch them with my mom and they help my family to understand what it's like for an EDS patient. You're a real inspiration, thanks for keeping it real #zebrastrong

[@nikki10114]

U getting ready is my theme song in the am

[@HeyItsZee_]

I LOVE THE FREY LIFE YESSS

[@scorpleeon]

❤️

[@shekeyra100]

is a mri not possible or would the 3d and 4d scans just like used for see babies

[@laniewisniewski1812]

On no... just read the title. Hope everything is ok. That is horrible surgery failed.

[@MeganSmithers]

I've only been watching for less than a year, so i don't think i actually know why you had a spinal fusion. Is it because of your EDS? Like is it super dangerous that you're not totally fused anymore?

[@ecologist_to_be]

Megan Smithers Connective tissue disorders can cause an unstable spine which is very dangerous if spinal cord for example is compromised.

[@colormezebra2841]

Love your vlogs, buyout, I jad go point out something silly I noticed. When you were talking about the nurse not being ablt to access you, I noticed that each time you raised,your eyebrows, your ponytail would rise abovr the top of your head. I know its silly to nitice it, bit I had to yell you. Why not laugh at ourselves, right? Glad you're done with this surgery.

[@kenzierose9198]

I know exactly what you mean by neurological nausea!

[@susanmargaretwills6432]

Such an elegant lady - Such a beautiful and smiling lady... How does she do it?

[@andytulip678]

🌻🌻🌻🌼🌼

[@willowithywindle]

You must feel like a punch bag dear Christina. And your mum must be feeling the distress too. Please pass my regards to her. My heart goes out to you, truly. I would like to have that aenethestist have someone jabbing tubes down his throat and to deal with the consequences, maybe he would have more compassion which he obviously lacks. Do they ever do breathing tubes through the trachea?

[@dreamerqueennotunderthemachine]

Omg i have had really similar symptoms to that..low and hard heart rate..that awful "neurological nausea".. maybe i need blood thinner.. or a neurosurgery ?

[@TaylaPotayta]

That’s a lot of stuff you have to do with a bad arm

[@TaylaPotayta]

Oh shoot I need to get those patches

[@life-gs7zr]

I'm not disabled but I hate it when people don't know the difference between how disabilities affect all races ages genders etc and laziness and disability

[@uniqueboutique7233]

Hi Christina if you ever had to do x-rays again get some liquid iodine and take 1 hour before x-rays, ct scan. it helps your body not absorb the radiation so much. also if you get x-rays not on your neck ask for a thyroid shield and a womb shield, if they don't need xrays on area of womb. the iodine drops (you just drop on your tongue it absorbs in your mouth) the one I use and like is. detoxadine from globalhealingcenter. com I've used a lot God bless you and yours Jesus loves you and is with you.

[@533134]

:(