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

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    #31
    Originally posted by IanTPoulter
    Shes doing great, thanks mate. Also regained trunk muscle function down to t12 level.
    Wow! Fantastic. Pleased to hear it, hope she gets more.
    C5/6 incomplete

    "I assume you all have guns and crack....."

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      #32
      Thanks, never listen to Doctors predictions is the moral of the story I think.

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        #33
        Bob, did your son get given methylprednisone? If not are they giving him anything specifically neuroprotective ?

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          #34
          Originally posted by IanTPoulter
          Bob, did your son get given methylprednisone?
          Yes they did (or so they have said). Thanks for asking.
          Right now he's fighting off infections & fever- UTI, fluid in his lungs,
          and as of yesterday a resistant strain of Strep.
          We had to visit wearing gowns & gloves (to protect us from carrying it out and into the public). But he's alert and communicative (kinda demanding for moisture on his mouth and cool cloths on his head) and off the sedatives. He's on a cooling blanket to keep his fever down. His color looks good, but there's swelling in his limbs. Still on the respirator.
          Bob B
          SCI - Parent

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            #35
            Originally posted by nide44
            Yes they did (or so they have said). Thanks for asking.
            Right now he's fighting off infections & fever- UTI, fluid in his lungs,
            and as of yesterday a resistant strain of Strep.
            We had to visit wearing gowns & gloves (to protect us from carrying it out and into the public). But he's alert and communicative (kinda demanding for moisture on his mouth and cool cloths on his head) and off the sedatives. He's on a cooling blanket to keep his fever down. His color looks good, but there's swelling in his limbs. Still on the respirator.
            Its good he got the MP. My daughter got all those infections including a pulmonary embolism at 3 weeks post, i believe its common at this stage. Sounds like they are doing everything right for him.
            Its positive that he is alert and communicative I think. Bob, keep asking questions about his treatment and dont hesitate to ask for help on this site.

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              #36
              One step forward and one(?) back!
              They succsessfully completed a neuro exam, and he cooperated. He has touxh sensation/feeling just about everywhere (toes too). He can move his arms one way but not the other (he doesn't 'push away' but can bring them up). He's running a fever still (101-103.6 fluctuating) and has contracted an antibiotic resistant Staph infection (gowns & gloves on, to visit him). Yesterday his fever was down (cooling blanket & fever meds) but last nite, I don't think he even knew I was there. He seems to get a high fever at nite. At least he's getting much needed sleep and rest.
              I'm there for him everyday, for at least an hour or two.
              His older sister (she's got 5 kids and is in nursing school) is there ftrom 12 noon (start of visiting) to 10 pm everyday.
              We're just hoping he gets well enough to go to a step-down unit.
              I think that if they get tight for space/beds at Shock Trauma Critical (he's there now) they could release him to a rehab without getting him better (?- fever/infection?) if at least his neck/spine is stable.
              I don't know. Everything is minute to minute and can change in a 'flash'.
              Oh, BTW- they have him sit in a wheelchair for 2 hrs everyday (will be increasing to 3 hrs, soon). He dosen't like it (?!?)
              He watches the clock & counts down the final minutes like a space shuttle blast-off.
              (10 mins. 5 mins, 3-2-1......... GET THE NURSE!)
              Can't wait to get back in the bed.
              He gets nauseated from it.
              Is this normal?
              Last edited by nide44; 17 Sep 2006, 9:50 AM.
              Bob B
              SCI - Parent

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                #37
                Can't wait to get back in the bed.
                He gets nauseated from it.
                Is this normal?
                it was for my daughter, she didnt get into a chair until 6 weeks after injury and she felt ill also. It got better over time and we found being upright has been a key to her recovery. I was told gravity will keep a person down if you let it. Also, being able to eat solid foods facilitated her recovery but your son may not be at that stage yet due to breathing difficulties.

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                  #38
                  Originally posted by nide44
                  Good thought. He was trying to crack a few jokes himself and I've been telling him that he's inherited his ugly face from me, and his big mouth from his mom. He smiled at that one.
                  We've got friends galore lining up to see him every day, and they all are a bit on the 'strange' side - just like us .
                  We'll keep him smiling.
                  Arent we all a bit on the 'strange' side if you think about it???? LOL

                  Just keep doing what you are doing.....I know it is so hard but just hand in there. Just 10 days is too early to tell about a SCI so I wouldnt share that info to soon......sending many internet hugs your way!!!!!
                  Last edited by darkeyed_daisy; 17 Sep 2006, 11:55 AM.
                  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

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                    #39
                    Sitting up at first makes you feel awful. Has to do with blood pressure getting too low, very common. The more he sits up the better it will be. Later, an abdominal binder can help with the low blood pressure, also there are meds for it. If he's dehydrated from the fever that's not helping.

                    Can he communicate yet? How's his skin holding up?

                    Hoping you've been able to stomach the ex.

                    I'm concerned about his sister. Please tell her this is a long haul. It's crucial she not burn out too soon. Is she checking his skin daily? Her nursing background could be quite a boon in this situation.

                    Good news about the sensation and the arm muscles. My amateur guess tells me there was some spinal cord spared there. It's hard for you to know now how huge a blessing this can be for your son. It can do great things for his future independence and quality of life.

                    Hang in there. We're pulling for all of you.
                    Blog:
                    Does This Wheelchair Make My Ass Look Fat?

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                      #40
                      If they do transfer him to rehab.... good rehab centers can handle infections... Don had a antibiotic resistant infection a couple of times in rehab and he was well taken care of. They did get Don up in a chair with a clam shell on and he hated it too in the trauma unit... the chair was not a good one (probably circa 1950).
                      It's great that he can feel touch.... they will be better able to assess him in rehab.

                      Keep us posted!

                      Sieg

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                        #41
                        Sounds good on the sensation part, in the grand scheme of things that SCI is not that bad if any SCI can be quantified as better than the other. A big plus for sure compared to a complete SCI variety. Maybe after the spinal shock wears off there will be some functional improvements.

                        Sitting up post injury is not good feeling, you have no blood pressure regulation and dizzyness will happen. Unfortunately a lot of ICU's have no idea of all the minutia with SCI, so an abdominal binder will be a big plus if you can get one for him as they really help with blood pressure early in the injury. Also, since he is getting all the lung infections which often are caused by constant suctioning, maybe see if they can use a technique called "quad coughing" instead of suctioning? It basically involves someone vigorously pushing up on his diaphragm while he coughs (as his abdominal musles dont work anymore to do this function). 300% more effective than suctioning. This is kind of a near and dear thing to me as I had similar lung issues that I think could have been minimized by knowledge of this back when I was in the ICU.

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                          #42
                          Originally posted by Andy
                          ............... so an abdominal binder will be a big plus if you can get one for him as they really help with blood pressure early in the injury. Also, since he is getting all the lung infections which often are caused by constant suctioning, maybe see if they can use a technique called "quad coughing" instead of suctioning? It basically involves someone vigorously pushing up on his diaphragm while he coughs (as his abdominal musles dont work anymore to do this function). 300% more effective than suctioning.....
                          andy, thanks for the information.
                          They do put a 'girdle' on his abdomen, so my daughter says
                          (she's there when they have him sitting up, usually)
                          I've seen a 'band' around him that looks like what you mean.
                          The pushing on the diaphragm is something he and his sister have figured out on thier own. They seem to do it frequently and he found it helps if she pushes while they are suctioning him, as well.
                          Bob B
                          SCI - Parent

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                            #43
                            He's still in CCU critical care.
                            I had been hoping he'd be at a 'step down' unit by now, but he's no where near that stage yet. Still fighting off infection & fever.
                            A few days ago an 'agency' nurse was his night nurse.
                            (I was surprised they used agency staff on this unit)
                            My daughter came in the next day to find him dirty with feces down his leg and 'support' stocking (the top section had to be cut away) his 'boot' was soiled (and had to be thrown away, we're waiting for a new one- it took a week to get the first one) and his linens and gown obviously had to be changed. And he had to be cleaned up.
                            He was unaware, as he's paralyzed and couldn't feel the problem.
                            She was furious and reported it to the patient advocate and nurse mgr. That nurse won't be back-- they say.
                            All the regular staff is very professional, attentive & supportive (although not as attentive as his sister). This is a nationally acclaimed, up to the minute, high tech, Shock Trauma CCU/ICU.

                            A portion of his lung collapsed yesterday. They are suspect of a possible PE (again !) and are supposed do a 'contrast medium' today. They had to do a Bronchioscopy and put in a different 'trake'. The first was 'leaking' air (?)
                            Pulled out a lot of 'junk' and may do another Broncosopy today, too.
                            He'd been fighting the 'vent' and complaining he couldn't breathe- gasping for breath when the respirator was doing 100% of the work.
                            He seemed to be resting a bit more comfortably when I saw him. Not gasping with his mouth open, and grimmacing like a pain or inability to breathe while asleep. Watching him is heart rendering. Last night he had his mouth closed and almost a smile was on his lips. He hasn't known I was there for the last 3 days, or at least hasn't responded to my voice.
                            I haven't communicated with him since last Fri.
                            He's been sedated and on pain meds and 'out of it' or sleeping.
                            He's still not stabilized.....he's still critical. His sister is still with him every day from the moment visiting hours start. Ten hours a day, alert, helping, suctioning, cooling cloths, mouth swabs of ice water, changing his boot, and hand braces, lip reading his needs. She's a God-send.
                            Bob B
                            SCI - Parent

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                              #44
                              Bob

                              Are they turning him regularly to prevent bedsores?

                              Agency nurses are always a worry. When I was in the acute unit it was always agency nurses who did things which freaked me out. Some were great but there was often a lack of common sense.

                              For instance they would help me clean my teeth and then wander off when I had a mouthful of toothpaste/water, knowing full well I couldn't reach out to grab a cup and spit it out.

                              They soon learned this wasn't a good idea when they were cleaning it off the wall/table/floor....
                              C5/6 incomplete

                              "I assume you all have guns and crack....."

                              Comment


                                #45
                                Reading your post, I can't help but think of our days in ICU. We too had a nurse that was awful. My son was in so much pain and his nurse was treating him with drugs that we knew, never worked for him in the past. He expressed that his pain level was high, and she really didn't seem interested. His student nurse who was at his side for days, tried getting her to administer drugs which she knew worked. The senior nurse wasn't about to listen to the student. The student nurse told me what was going on, and I requested a call from his doctor. That nurse was never assigned to him again. Don't hesitate to voice your concerns. It sounds like your daughter is on top of things and what a comfort that must be for you.

                                It sounds like your son might be in ICU awhile longer. The good news is that he will get the best care the hospital has to offer in ICU. Don't push to move him to a 'step down' room. The nursing care will be totally different. You want him to be as stable and comfortable as possible before they move him.

                                You mentioned he's having trouble with his lungs. Does he or did he ever have chest tubes? You might want to check out what type of infection they are treating him for. MRSA is a big problem in the hospitals and you might want to check to see if that is what he has. There are a number of postings on here regarding it.

                                It's a long road, stay informed and celebrate the positive changes. My son is more than a year out from injury and he had his 6th surgery a couple weeks ago. One more and we should be finished with the surgery end of things. On a positive note, his physical therapist found some glute muscles firing several weeks ago. This for us is huge! Who would have thought we would have ever taken such an interest in his butt? LOL
                                So, it's a mix of good days and not so good days. You have to take it as it comes and keep encouraging him. We're much better off than we were a year ago and chances are your family will be too!
                                "Our lives begin to end the day
                                we become silent about things that matter."
                                - Martin Luther King Jr

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