Announcement

Collapse
No announcement yet.

My Son Suffered A C-4/5 SCI Last Sunday....

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    #91
    Originally posted by nide44
    Rod,
    Thanks for seeing him & talking with him at the Hospital.
    It seemed to help.

    Update,
    Adam is getting around ans breathing much better. The trache wound seems to be healing nicely. his coccyx and heels are healing too.
    He zooms around in his chair and had an accident rolling it over on him- by hitting a curb outside the building, and having it tumble on him - face down on the asphalt. When they rolled him over on his back he said to the docs "DOC ! DOC ! There's something wrong- I can't feel my legs" . They had a laugh on that one.
    They've upped his Baclofen and mood elevators and his attitude is much better now. He has 'road rash' on his face, but the x-rays say he's OK.
    He's learning to do things with his hands 'tenodesis' (sp?) and is learning skills like brushing his teeth, picking up a cup, etc- but his hands really aren't showing any signs of 'recovery', yet.(can't really move his fingers to any degree) He still has to have help eating and has to be fed.
    He is trying to stregthen his abdomen & upper trunk with exercises, but really can't move them much, so far.
    He still needs to be 'cathed' every 4-6 hrs and has 'bowel training' (ugh!) every other day. (he hates that)
    There are just some things that I'm not equipped to do, but I try to help in any way I can- and am there for him every day.
    It's lucky he has tenodesis. I use it a lot, that's all I have in my right hand. Too bad about him doing an endo (code name for face-plant...end-over-end LOL)...it's the first of many. A friend of mine did one in Washington DC when we were all there in May, and he's been in a chair over 20 years! I think it's super news that he was able to laugh about it.

    Seems rehab is doing its job. He's adjusting.

    Yep, the cathing and bowel training isn't for the timid. That's ok, not everybody needs to do everything. When it was mentioned to my father, he blanched, actually turned green, opened his wallet and offered to pay nurses. It was DEFINITELY not something he ever planned to deal with hands-on! It seems a good idea if you could be instructed in case someday all systems fail and Adam needs emergency help, but I can understand you keeping a safe distance from that part. They wanted to train my husband in both, but I wouldn't let them teach him the bowel stuff. In retrospect, maybe a dangerously stubborn attitude on my part. He did do my cathing early on.

    The best thing is that Adam know how to talk somebody through the bowel program. Amazingly, we often find ourselves in the hospital and the staff has no clue what we're talking about. It really sucks, you're there because you're sick but they have no idea at all how to keep you alive.

    Sounds like yall are doing great. I'm so glad his mood is improving.
    Blog:
    Does This Wheelchair Make My Ass Look Fat?

    Comment


      #92
      Last nite he surprised me- he said "Give me your finger" and he held it & pinched it, slightly "Didja feel that?..... Not much - but at least, a little !".
      Later on I gave him some 'mad money' (gift shop has sodas, cafeteria has 'other' food- the nearby pizza shop delivers to the hospital) and asked whether he wanted a $10 bill or 2 $5's "Fives are prolly better", he said- and when I gave them to him he held them in the same way, without dropping them, and was able to tell I'd mistakenly given him 3 bills, not 2. (I took one back- seems things have a tendency to 'dissapear' around the ward- llike DVD's and earphones.......... and ca$h- we hid the 2 $5's. That is the height of total #@%&!@ - stealing from a quad. I guess a thief takes any advantage. The patients think its the 'agency' people.)
      Last edited by nide44; 6 Nov 2006, 11:11 AM.
      Bob B
      SCI - Parent

      Comment


        #93
        Whenever you notice money or anything missing, you should report it to the management/security.

        CWO
        The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

        Comment


          #94
          ALWAYS a good idea to hide cash! The patients are probably right about the sticky-fingered agency hires imo. Working in hospitals I've seen agency hires do some bad things. The one I remember most was an agency nurse that disappeared on her shift. She was finally located, passed out in a bathroom, tourniquet around her arm, needle in her vein. She'd been diluting injectable pain meds with saline, giving the dilute version to patients and keeping the extra for her recreational pleasure.

          She agreed to go to drug rehab before returning to work.

          Also, some of the rehab "techs" are so underpaid it's almost hard to blame them for stealing. They work like Trojans, doing a truly dirty job, and aren't paid survival wages.

          The pinch in his fingers is so awesome. Could you feel it? It seems clear to me that he's feeling it in there. It's like I was saying about the flickers in my legs. I knew I could feel it, just took a while to be strong enough for another person to detect.

          Being able to physically handle money is a skill we take for granted. On my first outing from rehab, that was one of the targets-we had to handle the money, pay our own admission into the museum, get the change back, put it in pocket or fanny pack. It's a survival skill you just never question till it's gone.

          What is he using for a wheelchair? I assume they have him in a power chair? Those little trips to the cafeteria to buy a candy bar are liberating, believe it or not. It's an accomplishment to get yourself somewhere and buy something. (Of course then you have to figure out how to open it up and eat it!)

          Ah, rehab. More challenging than anything except life itself.

          Thanks for these updates, Bob. It is so good to look here of a morning and see that Adam is on his way!
          Blog:
          Does This Wheelchair Make My Ass Look Fat?

          Comment


            #95
            Back in the dark ages of 1989......

            At least yall have/had a snack machine. Ours closed with the cafeteria which was at 5. The staff had a coke machine down the steps...

            We had a lady with alzheimers that came in everyday like clockwork and folded and refolded patty's underwear. I was a remote thief in those days because Patty was forever getting mad and flinging it....So I would go trade with some unknowing person down the hall. Why did a patient with Alheimers need a remote anyway?

            I am glad Adam is making progress.....My post was mainly to make you laugh and absolutely true. There is life after injury, Adam just has to be willing to find it.
            T12-L2; Burst fracture L1: Incomplete walking with AFO's and cane since 1989

            My goal in life is to be as good of a person my dog already thinks I am. ~Author Unknown

            Comment


              #96
              I'm Glad to hear Adam is doing well

              "But he was pierced for our transgressions,he was crushed for our iniquities; the punishment that brought us peace was upon him, and by his wounds we are healed" Isa 53:5

              Comment


                #97
                Tell Adam I have been praying for him. my church lifted him up in prayer yesterday.
                I was fortunate that when I was inpatiant at Kernan I never had any problem with theft, although I too was none to happy with the "agency nurses". I think the biggest problem was that they were not trained in sci. one thing that would bother me was when I would ask for something only to be told that "I have a bad back or my shoulder hurts I can't to it", I would say "i'll trade places with ya". the last thing I wanted to hear was how the people who are paid to be there to help me can't help me because they are hurting. also when they would bring my food try in and sit it on the counter just out of arms reach (not that I could pick it up anyway), all I could do is smell it for 30 minutes or so until they came back in to set me up to eat (by then it's cold). but the thing that would upset me the most was when I would be missing therapy waiting for someone to get me out of bed, keep on them about this. right now therapy time is of the utmost importance. but all in all their is some very good people on staff there. their is a oreintal nurse name miss "You", she is the best, she is highly trained in sci and has been there over 29 years. also theirs an aid name Darcell, she is on the night shift, she took wonderful care of me and gave me words of encouragement all the time, when she was working my wife was able to go home with peace that evening knowing I was in good hands. continue to keep us all updated on Adams progress, and I will see Adam on the 14th at the sci support group meeting, I hope that you and Adam's sister can make it also
                God bless

                "But he was pierced for our transgressions,he was crushed for our iniquities; the punishment that brought us peace was upon him, and by his wounds we are healed" Isa 53:5

                Comment


                  #98
                  Adam is progressing. Slowly...... but progressing... a bit.
                  He moved his legs when placed on his side and each leg was on the 'skate'. Both legs moved. He showed me that he could 'kick out' when sitting in his motorized chair (His sister cried when he showed that to her. I had to remove the foot rests, first) - but 2 days later, he couldn't move them again.
                  I don't know what that means.
                  His legs have been burning and hurting. He can't get comfortable either sitting or sleeping, so they did an x-ray.

                  It seems now that he has "HO" (Heterotopic Ossification)
                  He has it in both legs. This is not so good. 6mos to 1yr of treatment is what they say. Meds and aggressive P/T. Maybe it'll halt the progression? We don't know.

                  His right hand seems to be getting a bit stronger, and he has finger movement with his thumb and 2nd finger best. But he has no triceps 'firing', his biceps-are working, but pushing or throwing isn't.
                  He still has to be 'turned'/re-positioned in the chair
                  and in bed- 24 hours a day.

                  So far, his discharge date (12/5) hasn't been changed. I'm hoping it will - so he'll get more therapy (it seems something always interrupts or causes him to miss therapies, occasionally).

                  The philosophy at this facility is "If it (hands. fingers, legs) show(s) promise and will work-they give therapy on that area.
                  If not, they don't bother to try to get him able to move anything.
                  Its not a very pro-active method, in my way of thinking.
                  There are other methods that do try to get inactive muscles and limbs to work by constant e-stim. He gets some, but not as much -or where I feel he should be getting it. I want them to e-stim his hands more, as well as legs on the 'bike'.

                  If he shows promise betweeen now and 12/5, he could be extended by a week or two. I hope that does happen.
                  It'll mean they think he's doing really well with his therapies.
                  Last edited by nide44; 18 Nov 2006, 1:04 PM.
                  Bob B
                  SCI - Parent

                  Comment


                    #99
                    Originally posted by nide44
                    Adam is progressing. Slowly...... but progressing... a bit.
                    He moved his legs when placed on his side and each leg was on the 'skate'. Both legs moved. He showed me that he could 'kick out' when sitting in his motorized chair (His sister cried when he showed that to her. I had to remove the foot rests, first) - but 2 days later, he couldn't move them again.
                    I don't know what that means.
                    His legs have been burning and hurting. He can't get comfortable either sitting or sleeping, so they did an x-ray.

                    It seems now that he has "HO" (Heterotopic Ossification)
                    He has it in both legs. This is not so good. 6mos to 1yr of treatment is what they say. Meds and aggressive P/T. Maybe it'll halt the progression? We don't know.

                    His right hand seems to be getting a bit stronger, and he has finger movement with his thumb and 2nd finger best. But he has no triceps 'firing', his biceps-are working, but pushing or throwing isn't.
                    He still has to be 'turned'/re-positioned in the chair
                    and in bed- 24 hours a day.

                    So far, his discharge date (12/5) hasn't been changed. I'm hoping it will - so he'll get more therapy (it seems something always interrupts or causes him to miss therapies, occasionally).

                    The philosophy at this facility is "If it (hands. fingers, legs) show(s) promise and will work-they give therapy on that area.
                    If not, they don't bother to try to get him able to move anything.
                    Its not a very pro-active method, in my way of thinking.
                    There are other methods that do try to get inactive muscles and limbs to work by constant e-stim. He gets some, but not as much -or where I feel he should be getting it. I want them to e-stim his hands more, as well as legs on the 'bike'.

                    If he shows promise betweeen now and 12/5, he could be extended by a week or two. I hope that does happen.
                    It'll mean they think he's doing really well with his therapies.
                    He needs aggressive therapy whether it moves or not....which may be where the HO has come into play.

                    Even in the dump I was in, we worked everything whether it worked or not.....You might want to consider additional rehab at another better hospital?

                    It will be better for him in the long run....
                    T12-L2; Burst fracture L1: Incomplete walking with AFO's and cane since 1989

                    My goal in life is to be as good of a person my dog already thinks I am. ~Author Unknown

                    Comment


                      Adam is supposed to be discharged tomorrow. I'm very dissappointed in the case manager and the nursing supvsr (there is no soc. worker that has ever contacted us) regarding assistance and advice during this whole tragedy. They've been nothing but "firemen" just putting out emergency 'fires' and no regard for any planning or future care.
                      They make statements and then cop out to "do you have any questions" when we don't even know which questions to ask.
                      If it weren't for me and my daughter, he's be in a chair out front of the hospital with all his stuff thrown into trash bags and no plans for transportation home. We had to pry out of them that they could provide a way for him to be transported safely, other than one of our family's standard pasenger vehicles - that they could make arrangements for this.

                      His surgeon (at the first hospital), who can release him from having to wear his neck brace, initially wouldn't give him an appt until the 19th- AFTER discharge.
                      My son refuses to wear one, now- since all the docs at the rehab hospital say his x-rays are fine, but the original surgeon must release him. The first surgeon's seen the films, but says he has to see him in person. (one more visit $$ charge to the ins co.)
                      So he called them and told them to get fuck*d!
                      He wasn't going to go thru a whole day's probems with transportation. parking, waiting, etc when its the doc's & hospital's job to do it, while he was under hospital care.
                      So, after threats and arguing and refusals, they finally changed his appt - to the 12th!. Now he'll spend 1/2 the day of his discharge going thru all that crap instead of preparing to go home.
                      It'll also eliminate yet one more day (so many have been missed due to mix-ups, appointments, etc) of therapy he hoped he'd be getting (others have had last therapy the day of discharge- a good-bye and sweet/sad time for farewells).
                      I don't think the administration of this place even cares about its SCI patients- but is supposed to have a good reputation for SCI & rehab.
                      You couldn't prove it by me!
                      My wife's long term care unit (at a different hospital) will not diischarge a patient into an unsafe environment. They check.
                      This place hasn't done anything other than confirm (over the phone) the address where he will be living. He could be released to a totally unsafe environment and they haven't even bothered to check on it. My daughter has move heaven & earth to make the 1st floor of her home a handicapped safe, and equipped, environment - widening doors, installing ramps, changing bathroom facilities - to meet his needs.
                      This place doesn't even care.
                      She could have not spent the $$ and just told them she was 'planning' to do it. They's never have known the difference.
                      I don't know if the 'follow-up' visits by a nurse (or some other person) is from the hospital, or if they report about his physical accessability - downstream, but if he were at my wife's unit- he wouldn't be released until all that was confirmed, beforehand.
                      We have no idea about the supposed in-home therapy visits. How long they will be for, or when to start pursuing the applications for outpatient rehab either at the same hospital, or at another (I hope). They're probably going to give us that info on a xerox form letter sometime after discharge or hand it to us in a plain envelope with ten dozen other sheets of no value (or of great value, stuffed somewhere in the middle) as he boards the bus to go home. Here's your hat- don't let the door hit you on the ass on the way out!
                      Boy, dissapointed doesn't even cover the words I have, for that place's organization and 'people skills'.
                      Bob B
                      SCI - Parent

                      Comment


                        HMMMMMMM,,,,,,,,,,,,,

                        Sounds a bit like me, Soc. Worker was on Vacation, when I left, and I was picked up by my father, and your right about the door slaming, I was all but dumped in front of my house, and they all took off. Sad, but oh so true, it's a good thing he has wanted to fend for himself in the past. Now he'll need it. I know I had and did, try coming home ot a 2 story house on a hill. I refused to let my dad drive on the grass down to the house, instead I walked up a flight of stairs, and not to pat my self on the back, but I'm better on stairs than flat level ground. In my yard, there isn't any flat ground, now there's a deck, but it wasn't there when I came home. No one ever even called to see if I was still alive, but they sent the bills. I wish him all the best, and hope he can get the return that I have gotten. I can drive, cook, clean, and even shop, for myself now, but on the handicap curbs I get really iffy, I like to step over the sidewalk. Best of luck to him, PT is real important now, somehow I had to stop and start a bunch of times in the beginning. Don't get discouraged, if the same thing happens.

                        Comment


                          I have never thought about it, same story here though. We were never asked about home mods, certainly nobody ever came to physically check. I went home in my c-collar. I remember getting home, needing a particular suppository which (it turned out) pharmacies didn't carry. We had to rush back to the pharmacy at the rehab to buy some (before I exploded!), then learned to order them online. I actually called my peer counselor at home to problem-solve that one, that's how clueless we were! We had no contact number at TIRR for emergencies like that! We only made it home w/ caths because a rehab tech advised me to swipe plenty while my insurance was bein billed for them. You're right about the c-collar too, I saw the neurosurgeon a few weeks later to get cleared to get it off. He did nothing, just billed me once again.

                          My husband took me home in my Ford Taurus. I had in-home PT a few times, a nurse that did my bowel program for a few weeks, seems like my insurance company arranged all that.

                          My rehab was at TIRR in Houston, supposedly one of the good ones.

                          If they offer him a second admittance I'd recommend he accept it. This is where you return to rehab for a couple of weeks, a month or two after first returning home. It's a good chance for problem-solving, because by then you've figured out what some of the problems are. It's also a good chance to update PT programs after finally shedding the c-collar (or turtle shell for paras).

                          It really SUCKS to do, it's hard to go back to rehab once you've finally been freed. Nonetheless I'd recommend doing it.

                          My worst experience of being dumped off was during the first rehab stay. They took me to another (huge) hospital for a CAT scan. Dumped me off at the front door, told me to find radiology, I'm in a clunker w/chair that doesn't fit, no muscle, can hardly get anywhere. No caths, completely unprepared. Got to radiology, was handed sheaves of papers to fill out. I'm a quad LOL, I can't write! Yet I did. Taken to another room, told to climb on the table. Ummm, if I could climb, would I be here? It was surreal. Another quad was there, injured 6 months longer, he was experienced enough to make demands and get the help he needed. I just followed him. I know they saw quads from TIRR there every week, it was like some sadistic thrill for the radiology dept. to tell us to do things we clearly couldn't do. I was so panicked about my bladder. It was actually good training for the future, though, because you're right. When rehab ends, you're kicked to the curb and you'd better have some coping skills!

                          I wish him the best of luck. Rehab stays have been cut so drastically as insurance companies slash what they're willing to pay. Rehabs are so short-staffed, and they're germy as heck. He'll be lots safer at home, now that he's got the bare minimum of skills to deal with the situation. I hope he comes to Carecure someday. Please continue to keep us updated, and remember we're still here if we can ever help.
                          Last edited by betheny; 12 Dec 2006, 11:33 AM.
                          Blog:
                          Does This Wheelchair Make My Ass Look Fat?

                          Comment


                            In Texas, years ago the rehab team used to do a home safety evaluation weeks before discharge, make recommendations for modifications etc.. then the government/ insurance etc.. said home health had to do it not inpatient rehab. ANd of course, they can't get paid until after the patient is in the home.
                            If we discused the fneeds with the family, and they seem responsible then we have not much choice in believing them.The family & have responbility (and of course are usually quite wonderful) in this also.
                            Also, there is a shortage of nurses and therapists thorughout the United States so unfortunately there is a limit to what can be provided.
                            Be sure as much home health is set up as you can possibly get.


                            CWO
                            The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

                            Comment


                              dumped off

                              Bethany,,

                              I kind of hoped I was the only one who got "dumped off ", now I don't feel special!!!!!!!!

                              Comment


                                Originally posted by alhavel
                                Bethany,,

                                I kind of hoped I was the only one who got "dumped off ", now I don't feel special!!!!!!!!
                                Overwhelming, ain't it? Was I ever glad to get back to rehab and get my bladder emptied that day! Nope, we're not special. Just "special needs".
                                Blog:
                                Does This Wheelchair Make My Ass Look Fat?

                                Comment

                                Working...
                                X