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  • #31
    Meagan, I also join others to welcome you here and sorry about your step-dad's accident. It must be a relief to know he is going to a good SCI rehab and he is being weaned off of the vent. Very glad to hear his surgery went well. There are some things I wished I knew when I first had my SCI, including wish I knew about this CareCure site, a great source of collective knowledge most importantly, hope. So this is fantastic you made your way here to get this information.

    If his income is low, he may qualify for Medicaid. He may already be on institutional Medicaid. Get information on Medicaid and the Medicaid Waiver program for people with disabilities. It provides additional benefits for people once they go home. Here is the link to programs in Texas http://www.pascenter.org/state_based...hp?state=texas
    It is important to get this in place before he comes home. www.hhsc.state.tx.us/medicaid/med_info.html

    I agree with keeping a sense of family and comfort when in the hospital. How about listen to books on tape? I have made a "book" of jokes, funny pictures, animal pics, photos of family, etc... Putting up a photo board in the room. Books, videos, CD's...

    A big issue in ICU can be bed sores (decubitus ulcers). My friend developed stage IV ulcers while hospitalized in the ICU (they were stage IV to the bone). Once in rehab, does not take long before he will be home, so making arrangements for home modification, accessibility cannot be started too early. Good luck to Blake. He is lucky he has such a great and caring step-daughter.
    Last edited by med100; 01-07-2010, 06:15 PM.

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    • #32
      Med100, thank you so much for the medicaid links. Blake's father is getting all that set up but it still helps for me to look at it too so I will know in case he needs help with anything, and for my own peace of mind. It's nice to see how much help he can get so we don't feel totally worried about what will happen when he gets out.

      I never thought about books on tape... that is a great idea. I tried reading to him the other day but my mouth got tired of talking and I kept yawning, haha. I have a library card, I'll have to go up there and see what they have available.

      The ventilator weaning is going well... the nurses told my mom last night that the ventilator had been off all day and they just turned it back on so he could get some rest. When it is on, it's only doing like 40% of the work. I'm pretty sure it was doing 100% of the work before because someone mentioned that he was on "full ventilator support."

      I'm sure you were on a lot of pain meds after your accident, right? Did you ever hallucinate or talk nonsense? If so, did you have a sense of time, and did you miss people a whole lot when you were alone?

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      • #33
        Meagan, My pleasure. Many social services dept do not provide information on additional Medicaid options, so always good to get this filled out early. Yes, I did have a lot of side-effects from my pain medications, and got very ill..Morphine for severe pain for example, can cause hallucinations . Is this what is going on now for your step-dad? Has your family expressed your concerns? Maybe they could adjust the dose? How is he doing today?
        Last edited by med100; 01-07-2010, 06:09 PM.

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        • #34
          He's kinda delusional today. He's saying (mouthing words) that the nurses are trying to kill him, they're not giving him his medicine and they're taking it themselves. lol. They have him on Fentanyl, and they give him a dose every hour or so because when they don't he is in severe pain and really needs the medicine. They also have him on Versed which is a benzodiazepine for anxiety. I wonder if he will always need these meds? If not and they take him off of them eventually, I wonder if he will be addicted to them. I really wonder what his grasp on reality is like right now under the influence of all these meds. I wish there was some way I could know what he is going through

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          • #35
            Meagan, sorry about your step-dad sounding delusional.It could be the side-effects of the med. I would ask his doctor about it. It seems like something is not right. Will he always need the meds for pain? Some of this will be weaned of after he leaves the hospital or gets into SCI rehab. Titrating medicine is an ongoing art when it comes to pain management.
            He is not able to talk with you? Is he getting any physical therapy? When will he be in a model SCI program?

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            • #36
              Originally posted by blake7979 View Post
              He's kinda delusional today. He's saying (mouthing words) that the nurses are trying to kill him, they're not giving him his medicine and they're taking it themselves. lol. They have him on Fentanyl, and they give him a dose every hour or so because when they don't he is in severe pain and really needs the medicine. They also have him on Versed which is a benzodiazepine for anxiety. I wonder if he will always need these meds? If not and they take him off of them eventually, I wonder if he will be addicted to them. I really wonder what his grasp on reality is like right now under the influence of all these meds. I wish there was some way I could know what he is going through
              I'm so sorry you are both having such a hard time.

              He may or may not always need some meds. If he doesn't, they will be able to take him off them. People truly in pain very rarely get addicted. His body may be physically dependant - but that's ok. There are many medications that the body becomes dependant upon - all that's needed is to taper off the medications slowly, not just stop one day. You have many things to worry about now - I believe this does not have to be one of them

              It is so hard to see someone, when they're not "themself" and so confused - I am sorry.

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              • #37
                Originally posted by TAM63 View Post
                People truly in pain very rarely get addicted. His body may be physically dependant - but that's ok. There are many medications that the body becomes dependant upon - all that's needed is to taper off the medications slowly, not just stop one day. You have many things to worry about now - I believe this does not have to be one of them
                You have a good point there. Thanks. I won't worry about it anymore... I guess we can just deal with it if it happens.

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                • #38
                  Originally posted by med100 View Post
                  Meagan, sorry about your step-dad sounding delusional.It could be the side-effects of the med. I would ask his doctor about it. It seems like something is not right. Will he always need the meds for pain? Some of this will be weaned of after he leaves the hospital or gets into SCI rehab. Titrating medicine is an ongoing art when it comes to pain management.
                  He is not able to talk with you? Is he getting any physical therapy? When will he be in a model SCI program?
                  He has a trach so all he can do is mouth words right now. Sometimes they put a special valve thing in there (not a Passey-Muir though, it's one where he can still inhale through the ventilator but exhales through his mouth) so he can talk a little bit. They said they may be able to take him off the ventilator in a couple days though

                  As far as PT, I'm not sure what they're doing with him. I don't think they're doing much of anything right now We are looking at getting him transferred to an SCI rehab center either in Austin or San Antonio, but he has to get off the vent first. Hopefully he gets moved there soon. I think he needs to be doing the physical work ASAP or he won't get his movement back... is that how it works?

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                  • #39
                    I thought about something else - versed is amnesiac. So while he is "out of it" and saying odd things, and seems distressed, chances are he may very well not remember much or any of it.

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                    • #40
                      Hallucinations are part of the gig at first, just for the acute part. I had the ceiling tiles talking mean to me. Don't take it personally. It might soothe him if you just remind him about the drugs *You might have to say it repeatedly though!
                      Blog:
                      Does This Wheelchair Make My Ass Look Fat?

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                      • #41
                        Meagan, It is important to get him into a SCI rehab as soon as you can. Often we do so much better when we are in the hands of people who are experienced with SCI. I am not sure why he would have to be vent free to be transfered?

                        Getting turned every couple of hours is so important to make sure he does not get pressure sores. Are they doing this? Are they adjusting him? Have others pushed to get him more PT, up sitting, etc?

                        Are the places being considered Model SCI centers? Here is info on woundcare. http://www.mscisdisseminationcenter.org/

                        Can you get other members of your family to post.. I think it is so important to advocate for him strongly to get out and into the best SCI system you can ASAP.
                        Last edited by med100; 01-10-2010, 03:22 AM.

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                        • #42
                          The spinal cord model system in Texas is listed as being in Houston. I don't see any other one listed.... Which ones are being considered in other areas, and do they have SCI programs?

                          http://www.spinalinjury.net/html/_model_centers.html

                          Texas Model Spinal Cord Injury System
                          William H. Donovan, MD and Daniel E. Graves, Ph.D. and Kenneth Parsons, MD
                          The Institute for Rehabilitation and Research (TIRR)
                          1333 Moursund St.
                          Houston, TX 77030-3405
                          Contact: Karen A. Hart-Tudor, Ph.D.
                          voice: (713) 797-5946
                          fax: (713) 799-5025
                          e-mail: khart@bcm.tmc.edu
                          URL: http://www.bcm.edu/pm&r/sci/research/modelsystem/

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                          • #43
                            Originally posted by med100 View Post
                            The spinal cord model system in Texas is listed as being in Houston. I don't see any other one listed.... Which ones are being considered in other areas, and do they have SCI programs?
                            I didn't know about "model" SCI centers. I just thought you meant were we planning on getting him into a good one, lol. I'll have to get back to you with more info on the places we are considering. I know the place in Austin specializes in SCI but I don't know what it's called, and I just now heard about the one in San Antonio so I don't know the details on that yet.

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                            • #44
                              Originally posted by med100 View Post
                              Getting turned every couple of hours is so important to make sure he does not get pressure sores. Are they doing this? Are they adjusting him? Have others pushed to get him more PT, up sitting, etc?
                              They adjust him every couple of hours as far as I know. They can't turn him completely on his side or anything so they just prop one side up at a time with pillows. Today it seemed like his feet/legs were having more spasms than I had ever seen... could that be a sign that there is too much pressure on his heels or something? I'm also really worried about sacral sores. I don't think they put a pillow under that area, but maybe the propping up on the sides is tilting him enough to relieve the pressure on that area. I want to ask the nurses if they are doing everything they can to prevent pressure sores but I don't want them to think I'm saying they're not doing their job. They ordered some kind of abdominal brace so they can start sitting him up, we are just waiting for it. They come in ever so often and move his arms and legs around so his joints don't get stiff but that's about all they can do with him physically right now.

                              Can someone explain what is it they do in rehab as far as physical therapy, cause I really don't understand how they go about helping them get movement back and all that.

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                              • #45
                                versed

                                Originally posted by TAM63 View Post
                                I thought about something else - versed is amnesiac. So while he is "out of it" and saying odd things, and seems distressed, chances are he may very well not remember much or any of it.
                                yeah, I figured out that he doesn't remember a lot of things. He'll ask where he is and how he got there and he didn't remember that he had surgery on his neck. He also didn't remember them coming in there and moving his arms and legs around to prevent them from being stiff, and that's really painful for him. It sucks though, cause he says he wakes up every day and doesn't know where he is and he gets freaked out

                                oh yeah, I forgot to mention, they are starting to lessen his dosage of pain meds and they took him off fentanyl and put him on ativan. I just hope he can tolerate having a lower dose and hopefully he's not in too much pain.

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