A Very Difficult Day At The Hospital


[Shane] It’s the night before Spinraza and all through the house, Shane is not stirring because he has SMA and can’t move. [Hannah] Nope, note to self: Don’t put in vlog. [Music] [Shane] It’s like my fifteenth cup of water in the last three hours. I’m supposed to hydrate Before Spinraza- [Hannah] For like the week leading up to it. [Shane] Yeah, But I never remember until like 8 p.m. the night before. So, I’ve been chugging water; I’m so full of water. I’m gonna lay on the table to get my injection and just spew vomit – water vomit – out my mouth. [Hannah] All right… [wet barf noise] [Hannah] I think Shane might be a little bit nervous for his injection and it’s uh coming out in the form of [Shane] Humor [Hannah] very immature and bad humor. So, please forgive him for the terrible and disgusting jokes. [Shane] Can you get a shot of my hand sweat right now?
[Hannah] No.
[Shane] I am nervous! [Hannah] No one wants to see your hand sweat. [Shane] I know that like the first 7 injections have been fine, I know that it doesn’t really hurt that badly. But I just don’t want a needle… digging around in my neck. That does not make me- [Hannah] That’s fine! [Shane] That does not make me want to like calmly drift off to sleep tonight. So anyway, I’m all I’m full of water. I’m violently nau- [Hannah] Violently nervous. [Hannah] Full of water. Violently nervous. Don’t want to go. [Shane] I am full to the brim with water. I am… extremely anxious, and I’m not tired, and we have to get up at – 6am, to go to the Hospital. [Hannah] I really don’t want to get up at 6:00 a.m [Shane] We’re gonna try and take the camera into the injection room. [Hannah] I don’t know if there’s a problem with that they might have some sort of like hospital rule – no video recording in the operation room. [Shane] If I asked nicely and give them the puppy dog eyes. [Hannah] Yeah, yeah They said no to lots of things before. We’ve tried to film before. [Shane] Yeah. [Hannah] We’ll see. [Hannah] Try again. Shane you didn’t finish your last cup 14 and a half, not 15. Doesn’t count. [Shane] Nooo. [Music] [Shane] I’m focusing all of my energy on not throwing up all the water in me. What is the point of the water? Oh, for the blood test. [Hannah] Yeah, no yeah, it like plumps your veins up. [Shane] Right, cause I’m hard to get blood out of. So they say to hydrate. That’s a stupid reason. [Hannah] No. [Shane] Blood comes out either way. [Hannah] Well, no, you found that it doesn’t. [Shane] It-it eventually does, just takes a thousand sticks. [Hannah] That’s the worst part of the day though. [Shane] I forgot I have to get a blood test… [Hannah] Awww [Shane] I think I’m not gonna go. [Hannah] You are gonna go. [Shane] No. I think I don’t need Spinraza. I’m-I’m comfortable with my disability. Goodnight. Definitely missed that shot. [Hannah laughs] [Shane] It’s 6am. [Hannah] Awww [Hannah] Did you sleep well? [Shane] Yeah I did. I haven’t gotten up this early in a long time. [Hannah] Me either. [Shane] I used to get up this early every single day. I’ve lost my – my mojo. [Music] Everything that could’ve went wrong on the way here went wrong, so we’re about a half hour late. We have to go. [Hannah] Shane’s running. We have to run now to get Shane’s blood work. But we will tell you later what went wrong on our drive here. We’re all checked in. Nothing was in the system, as always. I don’t know why they have a system. If they- [Hannah] I think you could come any day. [Shane] I could just come whenever I felt like it. And convince them that I am here for Spinraza. And it would eventually happen. [Hannah] Get it every two months. [Shane] Yeah [Hannah] We’re waiting for blood now. [Shane] Blood work Not blood. Got my blood. Got my urine. Over there. We’re all set. [Hannah] We’re here in the right waiting room. [Shane] Yeah, we’re only 15 minutes late, I don’t know how that happened. [Hannah] Yup. [Shane] But look at this view. [Hannah] Awww … there’s our capital. [Nurse] I definitely think this procedure is really cool because I think the medicine is awesome. [Nurse] Alright, I’m going to park you here real quick! [Shane] Yep! [Hannah] Are you excited? [Shane] Am I excited? Hmm, that’s not the word I would use. [Hannah] Anxious to be done? [Shane] Ready. I’m ready. [Hannah] You’re ready. [Shane] Does this angle highlight my hair because my hair looks really good today. My injection is done. It was probably the hardest one yet. The doctor states that I’ve built up some scar tissue in that area where they do the injection every time because he had to like really work to get the needle in the right spot on my spine and that felt really weird as he’s, like, shoving it around and Maneuvering inside of me Umm … That at one point they were like, “Ok, we’re not getting it, we can’t get it.” so… that was a little… concerning [laughs] but they got it eventually and the actual injection was fine So… [Together] Thumbs up! Coffee. Aww! Yeah you have to baby me [Hannah] Yeah, he’s upset [Shane] I just had a really bad injection And I’m gonna milk it for all it’s worth [Bandaid being ripped off, complaining noises] Ow… is it off? [Hannah] I had to get a grip first, I had to do it in stages… your hair’s all over it [Shane] -hissing- [Hannah] Awwh okay … yeah good job [Shane] Ouch…ouch [Hannah] Was that worse than the injection itself? [Shane] It’s now the day after my spinraza injection After the procedure I got kind of a headache and I was like sore and just really tired from the roughness of the whole thing but I slept well and I feel a lot better today, just a little bit of soreness [Hannah] We’ve realized that we never explained the fiasco of getting to the hospital So yesterday we left at 7 a.m. We got up at 6 a.m. and we had to leave by 7 a.m. It was like a very quick timeline [Shane] We were right on time too. [Hannah] Yeah. [Shane] We got out the door at the exact minute that I wanted to that would put us at the hospital right at the right time. [Hannah] Shane didn’t plan for anything to go wrong because it was so early like I would have nixed that. [Shane] There is a limit to my need to be early, I was getting us there on time. [Hannah] So we get out to the van and I pull the handle to open the door that lets Shane’s ramp out – the side door – and it won’t open It’s like clicking and trying. It’s an automatic door and I’m like okay… [Shane] So it sounds like it’s about to explode [Hannah] Yeah so I start heaving at it, like trying to make it a manual door and it doesn’t like that. It likes to be automatic. [Shane] The ground beneath everywhere out there in our parking lot is pure ice. [Hannah] It’s an ice skating rink. [Shane] Completely ice. [Hannah] Yeah. [Shane] So Hannah’s…you can’t really- I’m pulling but I’m going with my… I cannot stand still. [Shane] Your feet were sliding. [Hannah] So Shane is right next to me so I can hold on, it’s absurd [Shane] And we realized realize that the door is frozen shut so Hannah opens the front door, climbs up to look at it at the top where it was frozen, and there was just a Dam of ice like all along the seam of the top of the door. [Hannah] Yeah, so I had- [Shane] Thick ice, it’s not like a little that you can just like chip off. [Hannah] Yeah, this was, it was frozen shut And I’m like so should you email them and say we can’t go? Like what should we do? [Shane] Well I was like: we’ll just yank on the door for a while. So it’s about 4 degrees outside- [Hannah] Yeah, it was under 10 degrees [Shane] And Hannah’s just yanking on the door, nothing’s happening. She runs inside to get gloves [Hannah] It was so painful. [Shane] So that adds 5 minutes… [Hannah] Then I’m standing on the side of the car trying to see above the door with our like ice scraper for the windshield and I’m just like hammering at this ice [Shane]Picking at it [Hannah]Yeah it took forever and then finally I got like the last little chunk off, I guess. This was like 15-20 minutes into this [Shane] It was a very cold ordeal. I had my jacket on but I was shivering by the end of it. [Hannah] So, then we finally got it to go. We drove, it was fine and we get to the parking deck at the hospital and There’s a line of cars. We’ve never seen that before. This man gets out of his car and runs inside. So now we’re trapped behind this guy and I’m like: excuse me you can’t leave your car, sir. Come back! [Shane] It looked like the zombie movie thing where someone gets out of their car and dashes away You know? [Hannah] Yeah. So… [Shane] Do you know that trope that I’m referring to? [Hannah] Finally he comes back because the thing that lets people in was broken. He was going to get help. Someone came, he comes back to his car. The guy that works there just like opens it up and it’s just like a free-for-all to go in so we didn’t have to pay which was nice. [Shane] So that added fifteen more minutes. [Hannah] Yeah, but it was broken so we sat there for about 10 minutes so we were pretty late. [Shane] We were late. [Hannah] But it all worked out it. [Shane] It did work out. [Hannah] Yeah. [Shane] It ended up not being a big deal like I got my injection almost right on time. [Hannah] It was almost early. [Shane] So… [Hannah] So… [Shane] But now it’s all over and I don’t have to do it for four more months. [Hannah] Yeah. [Shane] Yayyy! [Music]

100 thoughts on “A Very Difficult Day At The Hospital

  1. Yeah everyone should go 30 minutes late over your appointment time if you don't want to wait…because everyone usually has to wait for 30 minutes if you arrive exactly on your appointment time normally

  2. They should give you a Xanax and 0.25 mg for the day before and the day of your injections. I have had 46 injections in my neck, lower back, hips, knees and groins but I don't mind them. Good luck ๐Ÿ™๐Ÿ˜˜๐Ÿ’•๐Ÿ’™๐Ÿ’›๐Ÿงก๐Ÿ’š Nurse Bev Upstate NY

  3. OMG you two need to move to a warmer weather area. I know it would be difficult with Doctors and Family but it sure would make life much easier โฃ๏ธ

  4. Do you wonder what's going to happen when you go into hospital to have a baby?
    I'm not hating whatsoever, I'm just a deep thinker.
    When you guys have a baby you will have to rely a lot on family support. You won't be able to drive yourself in labour, when u have your baby you won't be able to take a day nap unless u have a friend or family member over as unfortunately your partner can't help you. I worry a lot, about lots of things. Not only will you be up every 2 hours with the newborn at night but you also will need to do house cleaning and prepare meals for the pair of u.
    It's going to be a lot of work.

    I think u guys r a cute couple

  5. Shane I feel bad you have to get those injections but I'm sure they help. Anything around bone is so painful. People don't know. I had to get two bone marrow biopsies and the doctors made light of it.

  6. Am I the only one who thinks the name of the drug sounds like a party (like lollapalooza…spinraza! weeeee). Do you think they did this on purpose? ๐Ÿ˜€

  7. God bless you having to go through these procedures….We'll all be celebrating your 99th birthday! xoxo

  8. ๐Ÿ˜๐Ÿ˜๐Ÿ˜๐Ÿ˜๐Ÿ˜๐Ÿ˜๐Ÿ˜๐Ÿ˜๐Ÿ˜๐Ÿ˜๐Ÿ˜๐Ÿ˜๐Ÿ˜๐Ÿ˜๐Ÿ˜๐Ÿ˜๐Ÿ˜๐Ÿ˜€

  9. Glory be to God and you are from Paradise Paradise๐ŸŒผ๐ŸŒป๐ŸŒน๐ŸŒธโค๐Ÿ’•๐ŸŒท๐Ÿ’“๐Ÿ’–๐ŸŒบ๐Ÿ’

  10. Ok so for the big big question, get ready………..are there gonna be wedding bells in the future? Or are you married already?

  11. I have no idea if this would be helpful with your situation but I was thinking about your contractures and wondered if using a quadrasizer would help loosen them. There are videos on YouTube of people that are helped using one. With your viewership you might be able to work out a deal with the company. I'm a retired occupational therapy practitioner and the machine really looks like it would help loosen your joints for skin care.

  12. You two are amazing. Iโ€™d cat call both of you! Hanna could be your shield from me picking you up and carrying you off for a laugh fest. Seriously though, beautiful souls. You are inspiring.

  13. God bless this day an time the test on meds for him are getting better than ten yrs ago you are better in this time soon will be a cure Jesus is the cure lots of love

  14. Why in the world do you two continue to live in Minnesota? I have been there numerous times and believe me, I was soooo glad to leave, especially in the winter lol. Have you guys thought about moving from there perhaps to somewhere that is warm all year long? Maybe Arizona, southern California or Florida? I lived most of my life in Michigan and 13 years ago I moved to northern Alabama, a decision I will never regret lol. It is so much nicer in the winter, yeah we get a little cold weather but nothing like Michigan does. Our spring started this year in February lol and I loved it and for the life of me I just cannot understand why people stay living in areas such as the Minneapolis areas, way to cold!! Get out of there!! So Shane, because of the scar tissue building up, what is the doctors solution? In 4 months, 2 as I am writing this, you have to go back and then again 4 months later and again another 4 months later, the scar tissue is just going to continue to build up, there must be some way to rectify that.

  15. Haha โค Shane is so cute. I love the relationship you guys have! I'm addicted since I watched SBK's video about 2 days ago! Subscribed right away and almost completely watched all videos on your channel. Much love to both of you โค

  16. Have you tried liquid IV? You can get it at Costco. When you put it into 16 ounces of water, it hydrates you like drinking 3-16 ounce bottles of water.

  17. Whatโ€™s going to happen if the scar tissue gets so bad that itโ€™s impossible to get the tube or needle into your spine? Because I know that without the injection your muscles will continue to weaken.

  18. Spinraza is Shaneโ€™s super power! *Shane uses his Spinraza to double his life,energy and becomes 10X stronger*!! Shane is a SUPERHERO ๐Ÿฆธโ€โ™‚๏ธ!!

  19. How do you guys afford one of the most costly medications and procedures in the United States? Does your insurance cover it? What kind of insurance is it? Is there a large copay? Do you go through any nonprofit groups to help you pay?

  20. Hey buddy ever time I watch the night before your treatment Iโ€™m nervous as hell myself. You got this bub.

  21. An amazing relationship something i wish i had….i spent 1 year in a relationship and just found out i have been lied to…..And now im taking my own life….thanks for making me smile ๐Ÿ˜ƒ

  22. Hi, can I ask you a question? I am a sma patient with platinum in my body and spinraza injections for lumbar puncture could not be done. Scopide was also told that the image could be given accompanied by a catheter. How do you get the medicine?

  23. I just had a colonoscopy 2 days ago and I was a anxious mess. This makes me realize that was nothing compared to what some have to go through continuously. I wish I had your bravery and spirit, Shane.

  24. Whenever your mind goes to thinking about that needle in your neck just start thinking about what this injection will do for you! Youโ€™re getting stronger! Thatโ€™s wonderful! Try to think about what that injection has done for you rather than the actual procedure

  25. I swear the more I watch the 2 of ye I fall in love with u all my love from your biggest fan and from Ireland ๐Ÿ˜๐Ÿ˜š๐Ÿ˜šโคโค

  26. Ouch for the injection ! Your a wonderful fiancรฉ and full of practical solutions in that pretty head of yours. Lovely couple, keep the videos coming, they make my day xxxxx

  27. Hi iv just come across your channel today. Iv just subscribed. Very funny, inspiring and motivating. How did you two meet? Thank you.

  28. ์•ˆ๋…•ํ•˜์„ธ์š” ํ•œ๊ตญ์‚ฌ๋žŒ
    ์ €๋Š”์žฅ์• ์ธ์ด๊ณ 
    ์–ธ์–ด์žฅ์• ์ธ

  29. Both of you are beautiful together – you play off each otherโ€™s personalities! Fun ๐Ÿ˜€

  30. I know I'm almost 5 months late, however I still wanted to wish u all the best and sending good thoughts u and Hannah's way. U two are perfect together, u compliment one another so well. LOVE ur sense of humor, even when times aren't that cheery. That's an amazing quality to have and shows ur inner strength. Congrats on the engagement, wish u both the best!! BTW, real quick, totally off topic question but where did u find or get that crazy, beautiful world map?! I've never seen anything like that, I'm definitely wanting to find that, if I'm able. So colorful and vibrant. ๐Ÿ™‚โคโคโค

  31. One spinraza injection cost 125000 dollars! Does your insurance pay the medical bills or how you can afford that?

  32. 0:11 Apparently you still did.
    4:53 If you don't mind me saying so, Shane… I prefer the view opposite to the one you offered.
    10:22 No, but then, I'm not into horror movies.

  33. If you can't laugh at life, how sad our days would be! Thank you for showing that differently abled,(which really is all of us), people face challenges and overcome them and laugh about it. Bravo!

  34. I wonder is this drug available in my area ๐Ÿค” my boyfriend has muscular atrophy and down here in sc we were told it's no treatment just garbapentin for pain ๐Ÿ˜‘

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