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New sci C5-C6, pls help with questions

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  • #16
    Adema, welcome. I was struck by your question of whether to have your brother turned against his wishes. This is such a hard thing to answer. Of course it would be better to have his cooperation as I can't even imagine a bunch of people coming to a new sci patient and forcibly turning him while being asked (screamed at?, begged?) not to. But everyone is right that he will suffer much more in the long run if he doesn't do it. It's really hard to respect someone's right to bodily autonomy when they can no longer take care of themselves and don't really know what's happening to them. Just thinking about it and remembering that time in my own life makes me want to cry. So I'll just echo the advice of others to try and give him as much info as he can handle to convince him of what needs to be done. And hopefully some meds will alleviate the pain and calm him a little.

    So sorry you're going through this. It does eventually get better.

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    • #17
      Thanks so much for your replies! It made me feel emotional seeing how everyone relates to each other on this site. Thanks for being here and helping each other. I found this site an invaluable resource, learnt so much from here.

      Got his Low Air Loss mattress from Holland today (genadyne make), will send it by cargo tomorrow to Kazakhstan. Mum says they were turning him a little today, he is quietly agreeing but have mood swings - from happy to grumpy, and they also prescribed some sort of pain-releaving cream for his shoulders which he always asks to apply (seems helping). He was moved from ICU to ward today, this made him happy, he even got TV in his room (a big thing for a hospital in Kazakhstan) and mum constantly there now day and night. On a negative side, no qualified medical stuff in nirmal ward, they even didnt know how to do suctioning today, and also he had a sudden temperature jump and stomach was really bloaten, so they had to run to ICU to get ICU staff to check and help with stomach. He continues to have digesting issues, so mum wll check if they can do electrostimulation of stomach tomorrow. We live day by day, just hoping things get better.

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      • #18
        My brother is a little better today, was eating a little too, which is very important docs say as he is very weak at the moment and lost lots of weight. Pneumonia seems coming back and docs decided to put him on antibiotics again. He is getting his PT and was turned few times today, even was laying on his left side for 30 mins, although pain was unbearable to start with but he is taking it in well.

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        • #19
          I am glad he is being turned. Thinking of you and your family.

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          • #20
            Hi Adema, I've been thinking about you and your brother. Since your family must provide his meals from home for him while he is in the hospital, and he needs lots of protein for his recovery, but he is having difficulty digesting it. I wonder if this suggestion might help?

            If you are not able to get the medical products like "Ensure," or "Sustecal,"etc...like SCI nurse mentioned earlier, might you be able to find products at a Sporting supply Store or even order online from UK like "High5 Protein Recovery" for example? Marathon runners, cyclist, and weight lifters use products during and after workouts that are easy to digest and can help target different nutrition needs. High Protein drink powders, usually whey protein, can be mixed with milk or water to provide a good boost of calories and protein as a supplement. They also sell eneregy gels but those are usually mostly carbs. Maybe others can jump in and help "brainstorm" some alternative suggestions.

            I hope your brother is able to eat well soon so he can begin to regain his strength.
            The IceDragon Avatar best represents my constant Freezing yet Burning Pain...not to mention all the other sensations that come with neuro pain

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            • #21
              Hi Still Learning and Linda. Thanks for thinking about my brother and your advises with nutrition. I have bought him milk and egg protein and soya protein but for some reason his dietitian says that he cant take it yet...not sure why, mum couldnt understand. I will check with mum tomorrow again to see when he can start protein.

              He was receving electrostimulation for his urine and bowel systems today, and he says he felt his bowel function, which made us all happy, although not sure whether this is any sort of progress. His temperature jumped again tonight and he started a new course of anbiotics. He felt very weak at the end of the day.

              When i was with him couple of weeks ago i noticed he was able to move his left leg up from frog position (i.e. half bended knee), he says sometimes it is felt as a reflex, other times he can do that himself...was just wondering if this is a sign of improvement? Docs at that time said it was too early for spasticity...Mum says he doesnt move it like this anymore.

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              • #22
                Adema, I hope you have been able to get more information on your brother these last couple of days. Is he allowed to have any protein yet? Maybe the dietician was still concerned about the function of his digestion. Protein can be difficult to digest.

                When someone is in the hospital here and has not been able to eat there is a gradual process that is generally followed to return to a full diet. Here are the basic steps:
                1. Clear Liquids (anything you can see through) water, apple juice, tea, broth
                2. Full Liquids (add milk products) milk, pudding, ice cream
                3. Restricted Diet (as necessary due to health requirements) Such as -Diabetic, Low Salt, Low Residue, High Protein, etc...
                4. Full Unresricted Diet

                The type of protein products that we were suggesting are more easily digested than regular foods that contain protein.

                Every SCI is unique and there will be many changes in your brothers situation over the next weeks, months, and years. I am glad that your brother has your love, support, and patience, and that you found us here!
                The IceDragon Avatar best represents my constant Freezing yet Burning Pain...not to mention all the other sensations that come with neuro pain

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                • #23
                  Still Learning, thanks a lot for your advise. Dietician still not so keen on protein. Im going to Kazakhstan myself this saturday hopefully and will see how we can start giving him more protein. They have removed traechostomy (spelling?) tube today, and he is trying to breath himself, it was difficult to start with, they wanted to put it back on, but were struggling and then he said that he will try to breathe himself. His saturation was going as low as 80. He is not sleeping now (it is night time in Kazakhstan) as he is afraid that he will stop breathing. Mum and nurse are sitting next to him watching his breathing. Had lots of secrations coming out, so he was struggling with it for a whole day too. I was thinking of getting him cough assist machine, but they are sold on prescription here in the UK, so i cant get one, and unfortunately they dont have anything similar in Kazakhstan. Do you know what else can help him to clear secretions? I hear of belt for the waist which helps to cough but not sure whether it is too early for him (and whether i can buy without prescription).

                  He still has pneumonia, and they are continuing with antibiotics at the moment.

                  thanks so much!

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                  • #24
                    Adema, Here is a Post from SCI Nurse KLD from a while back answering a question about the Cough-Assist Machine which fits your brothers situation:

                    Yes, we use our Cough-Assist machine extensively with both vent patients and with those who have been recently weaned but have secretion problems, as well as chronic injury patients when they have pneumonia. It really helps to move deep secretions up so that you don't have to suction so deep, and reduces the need for so much manual quad coughing. The vest only loosen secretions, but does not get them out of your lungs. Used together they can be quite effective.

                    We use it 4X daily routinely, plus any additional times as needed. It is easy to learn how to use and we have purchased them for several patients to use at home. We own one for our facility. Find out if your current facililty will purchase one and let you use it for now. We always do this first before deciding to request purchase for a specific patient.

                    You can learn more about it from the Emerson website: http://www.jhemerson.com/index.htm
                    They even have a sample medical justification letter on their site.

                    (KLD)
                    I am not a medical expert but it would seem that your brother would benefit greatly from this device. I do however realize that the cost may be too much.

                    The other alternative is learning how to perform a "manual quad cough" hopefully SCI Nurse will see this or you can send SCI Nurse a PM and ask her for instructions on how to perform this technique. It is a way of helping your brother cough with someone assisting him by pressing in on the right area of his diaphragm.

                    Respiratory therapists, aides, family members can be trained to help him do this "manual quad cough."

                    I am glad that you will be able to go see him. I hope that your trip goes well. Please be patient with him, yourself, and the rest of your family, at this point fatigue can really be setting in for everyone along with the stress. Prayers for safe travel and encouragement during your stay.
                    Last edited by Still Learning; 06-14-2010, 07:59 PM.
                    The IceDragon Avatar best represents my constant Freezing yet Burning Pain...not to mention all the other sensations that come with neuro pain

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                    • #25
                      Thanks Still Learning for your post, your warm words and thinking of us. PT started doing manual quad cough yesterday and also showed to my family how to do it, so they are learning now and helping my brother to cough. I have got a mucus flatter delivered today as well so hope this will help to loosen secretions. Good news is that i got EasyStand Evolv w/Glider today from Peterborough, so will take it with me to Kazakhstan on Saturday.

                      As an update on him - he is still fighting moments of high temperature, secretions. He is very optimistic though and having a laugh with my family sometimes on funny subjects, watches TV, waiting for his e-book now. My other older brother said that while massaging my little brother foot he noticed circular movements of his lower foot - heel side, not really sure whether he explained it right. But he himself didnt feel it and said he doesnt think he is doing it himself. We asked the doctor he says very unlikely that this is a sign of recovery, most probably neurological. Wonder if anyone experienced it and what this could mean?

                      Thanks

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                      • #26
                        Hello Adema, Thanks for the upate. It must be so hard for you trying to help from far. We use a quad cough and is very effective. Keeping in good spirits is a large part of the battle and he seems to be doing that.
                        Good luck!!!

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                        • #27
                          Originally posted by Adema View Post
                          PT started doing manual quad cough yesterday and also showed to my family how to do it, so they are learning now and helping my brother to cough. I have got a mucus flatter delivered today as well so hope this will help to loosen secretions. Good news is that i got EasyStand Evolv w/Glider today from Peterborough, so will take it with me to Kazakhstan on Saturday.

                          That is all Excellent News!

                          As an update on him - he is still fighting moments of high temperature, secretions. He is very optimistic though and having a laugh with my family sometimes on funny subjects, watches TV, waiting for his e-book now. My other older brother said that while massaging my little brother foot he noticed circular movements of his lower foot - heel side, not really sure whether he explained it right. But he himself didnt feel it and said he doesnt think he is doing it himself. We asked the doctor he says very unlikely that this is a sign of recovery, most probably neurological. Wonder if anyone experienced it and what this could mean?

                          Thanks
                          I am glad to hear of his optimism and laughter. The temps and secretions are part of the recovery struggle. The movement you describe sounds like it could be spasm or reflex type movement which your brother/his brain has no control over. That is not to say that he can not regain sensation or movement, it is still in the very early stages of his injury.

                          Continue to arm yourself with education and materials to share with him and your family, to help him get the best treatment he can. You know he will need to do a lot himself, and heavily rely on you, and the rest of the family, with the state of medicine being what it is there.

                          By the way, I spoke to my friend from Kazakhstan on the phone this week!
                          The IceDragon Avatar best represents my constant Freezing yet Burning Pain...not to mention all the other sensations that come with neuro pain

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                          • #28
                            Hi All, im back from Kazakhstan, spent two weeks with my brother in the hospital. He is doing much better now, getting his physio twice a day, massage for an hour, e-stimulation for legs and hands. Shoulders still in pain though, he is really struggling there. We started sitting him up in bed with legs down on the support boxes - only done it twice, the first time he even didnt notice shoulder pain - was so much excited about sittting up with legs down and sat like this for one hour. Second time sitting up was more difficult, couldnt sit for long, felt dizzy and headaches, legs went black, so they had to put him back laying on bed.

                            Was wondering about others experiences about fully sitting up in the wheelchair...can you pls let me know when on average after injury you started sitting without assistance? We considering Project Walk in CA, and planning to move there as soon as he is able to sit - so he can travel (very long travel - 6 hours to Frankfurt, then guess approx another 10 hours to CA). He seemed to be very weak yet, sleeps a lot, doesnt eat much...

                            And when he sat up - he said he doesnt feel his body at all! As if he doesnt have it - no pressure, nothing....very worrying....although doc said he is ASIA B, im afraid he might be wrong...as no feeling of pin pricks or touch either...although he says he feels pressure on his belly when i put my hand on his belly...

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                            • #29
                              Forgot to mention - he is off all breathing supports, cleared of secretions in his lungs for the last week - this is such a relief, makes him feel stronger. Had urological infection a week ago, but they gave him some antibiotics, and all seems clear now.

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                              • #30
                                Hi Adema, That is fantastic news about not needing breathing assistance.
                                I can't answer your other questions.
                                My husband takes medication before he gets up and mid day because he gets dizzy with low blood pressure.
                                Do you feel he is getting good care? How is he coping?
                                Best wishes.

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