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Help for my Dad - C5 complete

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    Help for my Dad - C5 complete

    Hello everyone. I'm glad I found this site - everyone seems to be so helpful.

    On 11/17/08, my dad was in a car accident that left him with a C5 complete injury. He is currently in OH (near Cleveland). He was on a respirator until Jan 2 but still requires breathing treatments as he can't seem to take really deep breaths on his own yet. (Is this normal?) I guess I'm coming here because we've never known anyone with a SCI and don't know what is normal and what to expect. (We have a lot of family up there, but I currently live in SC.)

    He still has a trach but cannot speak because it isn't the kind that allows air up to the vocal cords. Is there a reason for this? Can they not give him the speaking valve until he's off the ventilator permanently? I guess I don't understand this process. It's so difficult when he can't communicate for himself and the nurses don't always talk to him!

    He has a sacral wound that is taking a while to heal, but after reading some threads here, it looks like those take a while to heal. I will ask today if they are using anything with silver in it to help that process along.

    He also has a hard time regulating his body temp. His temp is up and down all the time. They've ruled out infection after over 8 weeks of every test under the sun. Is this something we'll have to deal with forever or will it get better with time?

    Really, I just want my Dad to get the best care available. Up until his accident, he was a very active and independent person. Everyone thought he was much younger than he really was because he was so active and young at heart. (He turned 60 just a month after his accident.) He had no health issues and didn't take medications (other than supplements) prior to his accident although he did monitor his cholesterol on a regular basis.

    I know every case is different, but what is the average time someone like my dad would spend in a rehab hospital before coming home?

    Any other advice is welcome and appreciated.

    So sorry to hear about your dad. This site will be extremely helpful to you and your family. The SCI nurse will be posting an answer to your questions soon. My son is a c6/7 so I don't have alot of info on a c5. However, my son also had a sacral pressure sore. It took time to heal, but it did in spite of medical staff who knew very little about sci. Hang in there, this is a tough journey and try not to think too far into the future, instead look at how far you/family/father have come since his accident. You all will get thru this, family support is what will get your dad thru this.


      hey sorry to hear bout ur a c5 complete myself..i had problems regulating my body temp when i first got hurt as well but after time it gets better..and the resperater i was on 2 months because i got nuemonia after surgury but they give me a thing to put on my trach so i could talk but i hope this helps


        So sorry about your dad. How old is he? Is he by any chance a military veteran? I assume he is not on Medicare yet and is still working as he is only 60, but does he have good insurance?

        What hospital is he in? He should be in a SCI specialty center ASAP, even before rehab if possible. MetroHealth in Cleveland would be the best if you can get him moved there. I am so sorry they let him get a preventable pressure ulcer. Medicare is no longer paying for longer stays caused by pressure ulcers so this is a serious error on the hospital's part. Insist on him being seen by a wound care specialist and meet with them about the care of the wound. I hope he is on a Low Air Loss (LAL) mattress, but even then he should be turned side to side and now allowed to lay directly on the wound.

        At his level respiratory problems will be ongoing. He is only breathing with his diaphragm, and does not have the use of his ribcage muscles or his abdominals. He will need to learn how to use "quad coughing" with assistance of others to get rid of his secretions. If he is off the vent, he should not have to have a cuffed trach any more (not full time anyway) ask why it is not deflated between meals or changed to an uncuffed trach so that he can start to use a speaking valve (Passey-Muir). He should also be getting diaphragm strengthening exercises. It takes 9X as much energy just to breathe for someone with his level of injury, so fatigue is always a concern. It is important to get the breathing muscles he has in good shape, and to prevent pneumonia or other problems that would cause secretions. If he has not had a flu shot this year, or ever had Pneumovax, he needs them now.

        Temperature regulation problems are common, although may be more severe at first. It is important to be sure he does not have a DVT, which can cause a low grade fever. Be sure he has been tested for this.

        What is his insurance? Without a fight, he is unlikely to get more than 5-6 weeks in acute rehab, so it is important to get into the right one (only a specialty SCI rehab center, never just a general rehab) and to start making plans immediately for him coming home.

        Please come here often. You may need to take some family leave to be with him during this critical time. He needs someone who can advocate for him since it sounds like right now he cannot advocate for himself.

        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.


          It takes an incredibly long time to heal even a little bit. We all lose a ton of weight post-sci, for instance. I believe we lose our appetites because our bodies work SO hard to heal, they can't spare the energy for digestion! THAT is how much it takes out of you.

          His body temp might be helped if they can keep his room comfortable and consistent. A quad's body takes on the temp of the surrounding air. It settled down a bit for me eventually. A co-worker brought me a really lightweight but warm comforter, an ultra-cheap one w/ the Little Mermaid on it, I think it was left over from some kid. It was perfect. Blankets need to be really light, as he is weak and also the weight of a heavy one can be painful. But a light warm blanket might make all the diff in keeping him warm, but not hot.

          When they take him to procedures, like xrays, urodynamics, cat scans-his blanket might be a comfort and keep him comfortable too. I was married to that darned blankie, like a 3 yr old.

          Please listen to SCI Nurse about not settling for an inferior rehab facility. He's already got a strike against him with the sacral sore. (I did too. Stupid hospitals!)

          I'd get him some REALLY good protein supplements. Not Ensure, it is sugary hogwash. If you can concoct a fruity, watery smoothy with lots of protein powder, it will heal that sore much faster. Flaxseed oil could be added, excellent for the skin. A teaspoon of ground flaxseed might make his bowel program go smoother-and that is a nightmare for all of us at first.

          Can you devise something like a bulletin board, with things he commonly needs, for him to communicate? Like have note cards on it, with things like "Cold" "Hot' "Thirsty" "Nauseous" "Watch football game" "Read to me" "Talk to me" "Hungry" "Sleepy", and he could point them out with a mouthstick?

          If he is in a room where he can't see daylight, tell your family to buy him an alarm clock with a.m. and p.m., ideally even the date and day of the week. It is scary to be so disoriented. I'd do that tomorrow if he is in ICU.

          Hopefully the wheels are turning for rehab. Your family is headed for the steepest learning curve I ever saw, and failures can be fatal. I don't want to scare yu, but the education we get in rehab KEEPS US ALIVE.

          Best wishes, good job finding us. Feel free to ask ANYTHING.

          How are his spirits, can you tell? Remember it is still him in there. He might enjoy watching a movie or somebody reading to him. The book that got me thru rehab was Moving Violations by John Hockenberry, a successful paraplegic.

          Is he getting enough sleep? Ambien is fruit of the gods in rehab. My roommate used to nose was broken, and I'd snore away while they cathed/rolled me in the middle of the night, after I got Ambien. I felt much better w/ sleep too, believe me!
          Does This Wheelchair Make My Ass Look Fat?


            Thank you so much for your responses. I'll try to answer all the questions:

            * My Dad just turned 60 on 12/16, one month after his accident. Prior to the accident, he was a very healthy, active man. His "retirement" job was working outdoors with landscaping and horses.

            * He is a veteran and my aunt (his sister who lives the closest) is working that angle to see what benefits he may be entitled to.

            * He is currently at University Hospital Extended Care Campus (formerly Heather Hill) in Chardon, OH. From what I understand, he is currently in the unit that specializes in patients on respirators, not necessarily SCI patients. (and I'm not so thrilled about the care he's receiving. I would love for him to be at MetroHealth - I'm going to check to see if we can get him transferred there.)

            * He does have a "wound nurse" but I'm still unclear on how they're treating his sore. My aunt will ask today for me. I believe he does have the bed you mentioned. It's an air mattress type bed.

            * I don't know if anyone has ever taught him or worked with him on "quad coughing" - I'll have my aunt or brother ask today. (My brother is flying out to be with him until Friday.)

            * He is not eating or drinking yet - he has a feeding tube. He has passed his swallow test with blue liquids, but hasn't passed with the blue pudding yet. Is this why they don't have the speaking valve in yet? Can you tell I'm so frustrated with that part. In the meantime, we read his lips most of the time, but he does have a letter board that he uses if we can't understand him.

            * What is DVT?

            * Apparently, he has really good insurance through Kodak (where he's retired from). He has a case manager and that's who I will have my aunt speak to when asking about MetroHealth.

            * He can see outside from his room and we already have 2 clocks so he can tell the time. We hooked a portable dvd player to the tv if he wants to watch movies. I'm the furthest away, but I call twice a day to check on him. Usually my night phone call they will hold up the phone to him and I'll pray with him.

            I love my dad so much and I want to be the best advocate for him. From the bottom of my heart, thank you so much for your responses.


              I forgot to add this his spirits are up and down. I know they give him Lexapro once a day and then Ativan when he asks for it. He takes Ambian at night if he asks for it, too. He's also on a pain patch (I forget the name) and Dilaudid.


                Hey i was in the same position as your dad that could not talk due to the tragy,if the nurse deflate the bubble on tragy he shoud be able to speak.The nurses use to deflate my tragy for about a half an hour max.some didnt want to.Before


                  sorry,before i could speak my parents would make a piece of board from a to z. and space.they would take a pencil and start pointing on the symbols. it takes a while to wright a sentanse but ones the got to the symbol that want them to use i knoted my head.i was very frustrated not to be able to comminicate but it worked


                    Do him a favor and get him to Metro. I sent 2 months at Heather Hell. Couldn't wait to get out of there. They dropped me 2 times getting from a hospital bed that was way to high , into my chair. I was wearing this stupid turtle shell thing. Keep telling them I needed a shorter bed. Week before I leave , I get the bed. Told them for 2 weeks I had a UTI. They didn't care. I was peeing big lumps of white stuff and it stunk bad. Tuesday before I leave they take a pee sample. I go home thursday. They called in cipro and my GF picked it up saturday. Well a bit late. I was sitting in the chair and bam , massive AD. Pressure was 215 - 185. Thought my head was going to blow up. My pressure is usally 110 -70. Lucky I had nitro paste my GF insisted I get or I would be dead now. I had a yeast infection in my bladder and going to my kidneys. The EMT's came to the house and never ever heard of AD , let alone have nitro paste. Had to get the trauma doctor at Metro on the phone to explain it to them. Called Heather Hell monday and told the head nurse what happen to me there. She could of cared less. So get him to Metro , anything or way you have to.
                    oh well


                      Just talked to my Dad's nurse. They are using Kaltostat and duaderm (sp?) to treat his wound.


                        Good thing your dad is a veteran. KLD will be here soon enough to give you advice there. You must work the Veteran angle with everything you got. It will save his skin, literally. There is no better care anywhere. Go for it.

                        One of the best SCI centers for Vets is at Cleveland. He is in good proximity for that center. Good luck.
                        Last edited by skippy13; 27 Jan 2009, 12:49 PM.
                        Anything worth doing, is worth doing to excess


                          A lot of good news here. Good insurance, VA benefits, and a son that loves him and calls to pray in the evening. It's a long haul. I think you have the ingredients to make it.
                          Does This Wheelchair Make My Ass Look Fat?


                            Impossible to know if the wound treatment is correct without seeing the wound. I would want to also know the stage and size and what the surface looks like (black, yellow, pink, red??).

                            He needs to be moved from the LTAC to an acute SCI rehab program NOW. Time is wasting, and at his age he will only get weaker the longer he is in that setting without the specialized SCI care and rehab he needs.

                            He should apply for VA health care benefits immediately. Check out some of the sticky topics in the Veterans forum here for how to do this. He should work with a PVA National Service Officer to do this. There is a VA SCI Center in Cleveland. If he cannot get into MetroHealth, he can go there NOW for his SCI care. There may be a co-payment, but his private insurance can be billed and the co-pay is very low. He should qualify as a Category 4 veteran which is important (some eligibility staff are not aware that a SCI mandates this). He can get much more equipment (like good wheelchairs, bathroom equipment, etc.) through the VA than he is likely to get from his private insurance, and he is unlikely to get sufficient inpatient rehab time under his insurance, even if it is good insurance, so if he does not want to go to the VA right away, a plan to transition there to complete his rehab prior to going home may be the best plan.

                            The blue dye test for swallow evaluation is outdated and the use of blue dye in tube feedings is no longer recommended and can be dangerous. He needs a formal videofluorscopic swallow study with a speech pathologist. The cuff may be put down on the trach for short periods for speaking with a Passey-Muir if the RT and nurses know what they are doing (of course with a physician's OK).

                            DVT is deep vein thrombosis. He needs to be on special preventive care to prevent this, which can be deadly if not prevented early after injury. You can get information about this from the sticky topics at the top of the Care forum (under clinical practice guidelines). He should have "leg squeezer" pumps on and be getting daily injections of low molecular weight heparin to prevent this for at least 12 weeks post injury, and we also recommend daily leg measurements by the nurses to help detect any early swelling that can indicate it is developing.

                            Please come back and ask more questions. We can help.

                            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.


                              My experiance with duadem was not good. It never lets the wound dry up. The nurse use to come to my house twice a week for 4 months changing the bandage on 2 wounds on my ankles. Made no progess in healing them. Lucky they never got infected. Just heavy 1/8" deep. Medicad would now longer pay for the visits when I got Medicare. I took care of them myself. Keep them clean and open to the air , no bandages. They dried up and were gone in about a month. I would put my feet up 2 or 3 times a day to keep new blood to the area. The duaderm is crap.
                              oh well