How do you know so much about swallows? Are you a king? 
umkay, I’m a middle aged woman who’s totally straight (though my gay friends tell me I’m the most bent straight person they know - I think that’s a compliment), and this is totally inappropriate, but this is the Dope, so I don’t care. I got a little crush on ya. You are Teh Awesum. Just popping in to say that. I got no questions, people have asked stuff that never occurred to me. (Another reason I love this place!) It seems your life is indeed charmed, and I hope it gets even charmier as you continue on your unique journey.
I’ll probably regret these two glasses of wine in the morning… 
Broomstick and Umkay, thank you both so much. I went in today and busted some heads, inasmuch as I can do that–I’m not a confrontational person at all. I got as far as the acting head of nursing (ADON) and tomorrow I’ll see the nurse practitioner, and I’m thinking the facility administrator if I can catch him.
I don’t want to hijack Umkay’s thread anymore then I already have, but I do want to answer your questions. I’ll try to keep it short.
As far as him eating goes, the excuse has been that they can’t do a swallow study because they can’t keep him in a chair long enough, due to the pressure sore. But, that excuse is no longer working for them, as he can - for the last month or so - sit in his chair for an hour or so at a time. It wipes him out, but he can do it. So I brought that up this morning and the ADON assures me she’ll get it ordered. When he was at the LTAC he was aspirating, and flunked every swallow study he took. So he came to this place on a tube, and they haven’t done a study since. I fully expect him to flunk it again. He couldn’t pass it when he was getting speech therapy, I don’t imagine he can now. But, my hope is that a failed study will either get him an order for speech therapy, or give me (another) medical reason to get him moved.
As far as turning him, I do believe that’s being done every two hours. I show up at all hours (and they know that they never know when I might appear) and he’s almost always where he should be. He says, occasionally, that he hasn’t been turned, but most the time, he says, they’re on it. And the handful of times he’s told me he hasn’t been turned, it’s usually been on what we call his Bad Days.
Bad Days = Hallucinations.
They’re getting fewer and farther in between, and now he understands that he’s hallucinating while it’s happening. (Which is weird to me, having not much experience with hallucinations myself.) The fact that he knows it’s happening is better than not, because he doesn’t get so angry at us for not being able to see what he sees. It’s gotten a lot better since they’ve been getting him up and around, so I stress to them to get him up as much as he can handle. And I stress to him to ask to get up. I’m trying to get it through his head that he’s in charge, but that’s been pretty slow going, too. It’s just his personality-he doesn’t like to ask for help, doesn’t want to bother anyone. I understand it. I was once hospitalized for 4 days and it was well into the third day before I realized I didn’t need permission to do (or not do) anything.
As for other stimulation, ugh. He doesn’t like TV. Once in awhile he’ll watch a movie, but he can’t stay awake, and once he’s asleep the background noise annoys him. I have his CDs there, and some of the nurses will put them on for him. He’d love to read, but he can’t hold a book, and doesn’t like audio books for the same reason he doesn’t watch movies. He’s a curious guy, so I spend a lot of time reading to him from Wikipedia. But I work full time, so that’s limited. We’ve talked about an iPad, down the road when he gets more control of his arm. He’s curious, and open minded, but a little intimidated by the technology.
As for the mouthstick? As soon as I convince him to put his teeth back in 
He’s never liked his dentures, only wore them in public and to eat. (In addition to being toothless, which made it super hard to read his lips before his voice came back, he’s blind in one eye and deaf in the other ear. Made talking to him a real challenge before he could turn his head, let me tell you. And to top it all off, he’s bald!)
He has a urine catheter and is on a bowel program-but, he still wears a diaper. I’ll have to ask about that. He did have a UTI back in January, but it’s all clear now.
I have a medical and financial POA, with my brother as secondary. We are trying to get him moved to AZ, but running into problems because he’s a NM resident. My brother is in Phoenix and I can move again, and plus there is just so many more options there. And we could tag team it, which would help me a lot. From what I understand, if he was hospitalized again, then we could get him discharged to an AZ facility. But we can’t simply transfer him until he’s Medicaid approved in AZ, and we can’t apply for Medicaid in AZ until he’s a resident of AZ. It’s a maze.
And the RT? ADON first said that breathing treatments, et al, were not necessary for all quads. I disagreed, and she decided to pass the buck, hence my meeting tomorrow. I’ve also been trying to get his medical records for weeks. I want to see measurements on the pressure sore. If it’s not significantly smaller (and I realize it takes time) then it was when he moved in, the plan is to get him hospitalized again. I can see that his arms and legs are worse, but I rarely look at the sore. Not because it’s awkward for me so much, just because I’m his daughter, he deserves to keep a modicum of privacy. The facility is dragging their feet on the records, so I knocked some record keeping heads today, too.
Thanks again, and thanks for the links, too. I browsed the message board you linked, Umkay, and can already tell I’ll be spending a lot of time there. Gotta hit the sack, now.
Posting from the phone-not advised! I pasted that whole damn post in twice. Could a mod, perchance, correct that please
Reported to get a mod’s attention.
Not that they need a Report - I am sure mods are reading this thread out of the interest of it. Add my voice to the others commenting on this thread: Thanks for driving a great conversation, umkay.
Sami, maybe you can start another thread to keep us updated on your Pops? I’ll sure be wanting to know how he’s doing! HUGS for both of you You’ll be in my prayers!
& Thank you Broomstick & Umkay. You guys ROCK!!
Ahaha! I’ve never heard it put that way, but that’s as good a name for my basic life philosophy as any. Of course, as I was pondering this, I stumbled upon a bit of irony: The FTS attitude that has been so helpful to me in dealing with my disabillity has probably always been a part of me, and may in fact have been a significant factor in the accident that paralyzed me in the first place. :smack:
However, I think it’s important to affirm that yes, of course, I went through a period of horror/grieving/terror when I realized the enormity of my injury and how it was going to radically change my life. I’m not emotionally bullet-proof or a two-dimensional caricature of an “overcoming” disabled woman.
In the hospital, I didn’t really understand what was happening. You’d be surprised how little doctors talk to you personally when you’re 14 and just survived a life-changing injury. I got most of the news second-hand, through my parents. And they were honest, but guarded, in what they shared with me. Also, there was a bit of plain old denial on my part, so I found a mental workaround to even the things they did share with me: I thought, like most new SCIs, that the rules didn’t apply to me, that I was going to be the exception.
Theeeen I transferred to rehab, and sh*t got real. I was classified as a C2, vent-dependent quadriplegic at the time, but I was ready for the PTs to get me up and walking on those parallel bars! :rolleyes: It took about 2 days to realize that the point of my rehab was mainly occupational, not physical. With my cord totally disconnected, the therapists knew better than I that I would not be getting much back, if anything, in terms of movement or sensation. [In fact, back in the day, high quads like myself were sent to institutions or nursing homes as soon as they were healed up enough to leave the hospital–it was assumed that there was no point in them coming to rehab]. Instead of going to the gym with the paras and low quads, I was taken to a separate room and given mouthstick lessons and instruction on how to assertively direct my own care for the rest of my life.
When this reality sunk in, I was devastated, and I took it out on everybody around me. I told my parents I would never go back to school, and I fully planned to live the rest of my life hiding from the world.
So my parents were the first and most important influences on getting me back on track, mentally, and getting me to where I am today. My mom and dad told me I had to go to high school, because without a high school diploma, I couldn’t get into college. I was like, “College?? I can’t go to college!!” And their bemused response was, “Well, if you don’t go to college, how are you going to get a good job and support yourself?” To which I said, “Whaaaaaa? A JOB? How am I supposed to work?? I can’t move my f*cking BODY!” And they were all, “Why do you need to move your body to work?” And I was all, “I feel like I’m taking crazy pills! What is wrong with you people??.” Basically, they were blowing my mind. :eek:
But the message was getting through. They still fully expected me to live a life where I contributed to the world and took care of myself, albeit with some help. Because that was their assumption, I eventually started to assume that was true, too. And because of their resources, it really was true.
Still, going home was hard. While I’d been gone, so much had changed. I’d gotten hurt in winter; it was now almost summer. My room had been upstairs; now it was downstairs. My house was totally renovated to be accessible to me, which was a good thing, but it was also sad. Ramps led to all the doors, doorways had been widened, and there was a huge new wheelchair-accessible bathroom, as well as enough medical equipment to run an ER, in my room. You’d think all that would make me stoked, but it really just made everything so much more permanent: My parents would not have redone their whole house if they thought there was any chance I wouldn’t use a wheelchair for the rest of my life. So coming home was healing and hurtful at the same time.
And that’s where my brothers came in, who were the second biggest influence on me getting back to being me. My two oldest brothers were in college at the time and had had summer plans that didn’t involve coming home. But when I got hurt, they canceled them. So that summer that I first was home, I had my whole family around me. My parents were pushing me to achieve, which was great for me, but my big brothers just made me feel normal again.
As the youngest and only girl in a family of boys, I had always just naturally tried to keep up with the boys. They had always passively let me tag along, but now they actively included me in everything they did. I was still shy and embarrassed in public, but they erected an effective blockade around me, blotting out stares and whispers and just acting like my wheelchair was no big deal. I was also a little bit scared to go out at first, since I relied on a machine to breathe for me. But they learned how to do any care I’d need while we were out for a few hours at a restaurant or at a friend’s house, so that neither my parents nor a caregiver had to tag along. I learned that I wasn’t as fragile as I had thought, and I really trusted that my brothers could fix anything that went wrong. [Man, I’m tearing up thinking about that time]. Them being home that summer, being kind and encouraging, but also giving me the nickname “Darth” because of the ventilator, was a big reason I was I able to drum up the courage to insist my doctors attempt to take me off the vent ASAP. 
So, the short answer to your question is that my family is the most amazing one in the whole world, and I never ever could imagine my life being as great as it is today without them. 
I’ll second all of that - the thread, and the thanks to our resident experts.
Sami, your dad is really lucky to have you! Good for you on busting heads, I know how hard it is to be firm when you’re not really a confrontational person. I’ve found that getting really blisteringly angry helps a lot, as long as I can keep my temper!
Umkay, your description of what your brothers did for you got me tearing up too. I know you may not exactly want your family to read this thread (!) but I sure hope your brothers know how special they really are. You can tell them that like you, they have a bunch of fans on this site, even if you don’t tell them where we are.
And Sami41, good luck and please do start a thread to keep us up to date.
umkay, have you by chance seen the TV series Friday Night Lights? One of the main characters in the first 2 1/2 seasons is a star athlete who suffers an SCI. He ends up having use of his arms, but the function of his hands is limited. He has many experiences similar to what you’ve described. In fact your forthright accounts give me the feeling that the show’s portrayal of this character is fairly accurate.
You mentioned a while back that you were on the ventilator for several months, and then, after much physical therapy and work on your part, that you were able to go off of it. I’m curious: what kind of “work” is involved on your part? How does one go from being on a ventilator to not being on a ventilator? I meant to ask this a long time ago when I first found out that ol’ Quasimodem used to work as a respiratory therapist, and your comments made that question bubble back up to the surface.
Also, I lost track: how many siblings do you have? I know there’s a twinning in there somewhere - that’s you, right?
I outlined the process by which I got off the vent in post #294. 
I have 3 older brothers and a twin brother, who is also technically older than me by a couple minutes. Five of us kids, total. So I get to be the only girl AND the baby of the family.
One last detour regarding **Sami41’s **dad:
Good for you!
Unfortunately, he has to learn to do this. The only way he can now take care of himself is to tell other people what he needs. If he does not do that and becomes ill on account of “not wanting to bother other people” he will only be MORE of a burden.
I know that’s frustrating for him. My spouse is far less disabled and even after 20 years it bugs the crap out of him to ask me for help. I’ve also read him the riot act on occasion because reluctance to ask for help has at times led to medical emergencies and/or hospital stays - and that’s for someone much less disabled than your father. He needs to understand that being assertive about his own maintenance is the biggest favor he can do for his caretakers.
The third point is that it is the JOB of these people to tend to his physical needs. That is what they do, that is why they get paid. It’s not hardship, it’s employment. Again, helping them do their job by reminding others of his needs is really the most helpful thing he can do right now.
Unfortunately, quads don’t get physical privacy (right, umkay?) It’s not fair, but giving him that “modicum of privacy” can be quite hazardous. You (or your brother, if that’s more feasible) need to keep an eye on these things, a literal eye, until your father gets to the point he really is managing his care with trustworthy people.
I suggest asking for regular copies of everything. Good on you for doing all this, I know it’s tough.
I greatly appreciate this thread from a public-service perspective. Thanks Umkay.
Along these lines, but more general… what are the best (and worst?) portrayals of the disabled that you’ve seen in TV/movies/books?
Many here have already said how awesome this thread is and you are - agree there, big time. Love your raw honesty and down-to-earth exchanges. Thank you for enlightening us about ladies/people in chairs.
I love your spirit, including:
and
and
and
FTS, INLIKMD.
Amen, sister. Okay, three questions are (I don’t think these have been asked):
What field/specialties do you recruit for?
What do you think of the Jill Kinmont Boothe story? I can imagine you at 17, not having tried that flip/jump at 14, making a run at the Olympic snowboarding team. I suspect you’d have kicked ash and taken names.
Hey, you’re not a valley girl, are you? (Like, really?) Do valley girls exist in the 21st century?
And yes, umkay, you do rock.
Ah, an angle I hadn’t considered. Yes, I suppose I am biased toward the more modern interpretation.
It makes sense that I would be ambulatory if I were resurrected by some kind of sorcerer. After all, a clipped spinal cord is no greater obstacle to a fully mobile zombie existence than any of the other myriad magical things that have to happen in order to make a zombie in this way.
(And yes, this is why I love The Dope, too).
ETA: I still wouldn’t do it. Ewwwwwww…
That’s good news! Can you ask if an FEES is a possibility? It’s specifically for patients who are bedridden or, like I was, in a halo for a spinal cord injury.
Ain’t that the truth! You start thinking they’re God or the police, when really, you’re there by your own volition.
What about a Kindle Touch on a reading stand? They’re marvelously accessible, because their screens are not capacitive, i.e. you can touch the screen with any object (like a plain old mouthstick) to turn the page or open a menu. [This is in juxtaposition to iPads and the like, whose screens require an electrical impulse, so if you’re like me and can’t use your arms, you have to use a special mouthstick that conducts the electrical signal]. They are pretty affordable ($99 I think?), and they’re not very complicated to use or set up. Also, they’ve got that great e-Ink display, so it’s like reading the page of a book, which might be more to your dad’s liking than a fancy-schmancy LED display.
Hm. That’s a complication, but I don’t see it necessarily precluding him using a mouthstick. The ends of my mouthsticks that go in my mouth are designed by my dentist. I’m almost certain a dentist could fashion one for him that would work on his gums. But this may be prohibitively expensive… 
Sounds like they may be having him in a diaper to prevent messy accidents. As long as it’s only for accidents, and he’s not EVER left with a soiled undergarment, that’s fine. But really, it would be better if they could just put chux under him, so they’d always know right away if he had an accident.
I don’t know what she means by “breathing treatments,” but if your dad can’t cough (and I’d be shocked if he could at C4-5), he needs someone to do it for him. It doesn’t have to be a big fancy routine, but he’s gotta have some way to clear that airway everyday. Do they know how to execute a quad cough?
Ugh. I understand this so much. I appreciate your sensitivity, but what Broomstick said is right: Privacy is a luxury that high quads can’t afford. The longer he goes without the attention he needs, the more danger he’s in. If the nursing home staff can’t or won’t do this (that remains to be seen, after your head-knocking), you might have to. Preserve as much of his dignity as you can, of course, but in a battle between my dignity and my life, my life always wins. KWIM?
Good luck to you and keep us up to date.
I have definitely looked into it. I don’t think traditional bungee jumping is an option for me, though some chair-users have done it. You have to do it in your chair, since it’s not a good idea to be jerking on the hips of a paralyzed person. But it’s a lot of movement, much more than skydiving is (not to mention that I was harnessed to an AB instructor when I sky dived), and I think it would feel pretty scary and out of control to me.
I have heard of quads doing a modified bungee, like the kind you see at fairs and amusement parks, where you sit in a cage, suspended between two posts by bungee cords. This is probably a better option for me, though I’m not planning on doing it any time soon.
First, I’m sorry your son has to go through that. CF sucks.
Second, I haven’t used a Vest like that, but I’ve seen them and I know some quads use them. Most days, a few minutes of quad coughing are enough for me to get cleared up. However, whenever I’m even slightly under the weather with a cold or other respiratory issue, I use a CoughAssist machine, otherwise known as an in-exsufflator. Briefly, a mask is placed over my nose and mouth, and the machine fills my lungs with air. Then, it sharply sucks the air out of my lungs, simulating a cough. Has your son ever used one? I have no idea if they’d be indicated for CF, but they’re fantastic for quads.