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  • If he's able to breathe on his own, does he need a cuff in place all the time? I've used a vent for 25 years and haven't had a cuffed trach except for the first month or so. I talk regularly and have many "normal" conversations throughout the day.

    When your brother is using the vent, try having the cuff deflated. If he's able to maintain his oxygen, it may allow a barrier to be overcome.
    C2/3 quad since February 20, 1985.

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    • Harberrat, how is your brother doing?

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      • Originally posted by med100 View Post
        Harberrat, how is your brother doing?
        Hi Med100,
        My brother is doing well. I think he is impatient and would like to see more progress in the arm and leg dept. but I have explained to him that barely three weeks ago he was lying in a hospital bed on a vent 24/7. Now he has had times off the vent for up to four hours at a time. He has been eating some chopped food and in my opinion is making fantastic progress. Still having appetite issues. Not really eating lunch, but I am sure that will come. I have been a little busy between travel to the rehab, work etc.. so haven't posted much. Starting to look into post care for him. I hope there is something out there that will be good for him and allow him to continue his therapy. All new territory for my family, you know? Anyway, I wish you guys all the best and thankyou again for all of your help and support. Almost forgot, he is also talking really well. I walked into his room and asked how he was doing (expecting a nod) and to my surprise he said in a clear and concise tone " Good, how are you" I almost fell over! My heart swelled with joy. You guys were right! Small steps mean alot! Take care and keep hope.....Hope is not lost!

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        • Harberrat-Your post made my eyes tear up. Hope is not lost is right!!
          I think he is doing great, and understand the joy you described. Yes, it really is new territory for your family. We are a year and a half out and still new territory. We had a lot of two step forward one step back weeks.
          Check in when you have a chance. Wish your brother well from some friends in MN.

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          • yay~!!!!!

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            • Hey Harbarret, so come on.. ask us how we are doing? Guess what, we are going to say, GREAT! That is, after reading your post! It is such an emotionally challenging time..SCI can take away our spirit and energies, but also can renew us in new and different ways. Yes, his appetite will get better. Sometimes the medication as well as lack of activity, nausea depression, or any infections can affect one's appetite. No more nods, now talking away. This is just fabulous! One day at a time my friends...

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              • Thanks for the update Harberrat.

                I'm quite glad things are improving for your brother.

                Regarding appetite, at this point, I certainly wouldn't be too concerned if, say, he only has the appetite for one normal-size meal a day. One reason is he doesn't need as many calories as typically busy able-bodied people need, since he'll burn way fewer calories from the decreased exercise.

                I basically eat one average-to-large meal a day, which is how I control my weight. But because I basically just eat one meal, I can afford to snack some and eat dessert too, while maintaining my weight. (I'm a big fan of dessert!) Overall, I try to have a fairly healthy diet, and take some supplements, too.

                I don't swallow large pills well, so we sought a colloidal vitamin & mineral mixture that I can drink. I've used the stuff (Buried Treasure) at the below link for years (it's good when mixed with apple juice or orange juice) and I think it supports me well and helps me to have plenty of energy:

                http://www.vitacost.com/Buried-Treasure-VM-100-Complete

                If you're going to buy anything from the above website, you can get 5% cash back if you register for free at (and shop through) FatWallet.com:

                http://www.fatwallet.com

                (Just a tip for shopping through FatWallet.com: find what you want from the vendor you want -- Froogle.com, which is Google's shopping service, is a great place to start your shopping -- and see if they are a member of Fat Wallet. If they are, close & open a new browser, clear your cookies, then sign-in at Fat Wallet and use their link to your vendor. That should ensure your purchase is automatically credited back to your free Fat Wallet account.)

                I just thought I could offer a different perspective to a decreased appetite.

                God bless!

                Bill
                Last edited by BillMiller823; 03-08-2010, 02:23 AM. Reason: Fat Wallet tip
                Wheelchair users -- even high-level quads... WANNA BOWL?

                I'm a C1-2 with a legit 255 high bowling game.

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                • Hey Harberrat, have not heard from you in a few days. How is your brother doing?
                  Bill, thanks for the info on vitamins, etc :-)

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                  • Hi Guys,
                    My brother is doing well. Off vent for 6 hrs. at a time. Eating better and talking better. All good news. Says he can feel pressure when he is touched but not really feel the actual touch. Does that make sense to anyone? Any implications or conclusions that can be drawn from that? On other subjects we are having a hard time getting medicaid for him. Just denied. We were told to apply for everything we could ie: disability, unemployment etc... but now medicaid says he is making too much from disability to get medicaid!!!! Which is what he needs for care someplace after rehab. They won't take him unless medicaid is in place! We are in NJ and don't understand that you do what they ask thenn they deny you for doing so! Anyone have any insight?? Thanks for all the help and caring.

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                    • Harberrat, I think there may be ways around this for getting his Medicaid.
                      What you have to do is a spend-down to keep it under $2000.00 a month assets.
                      So can buy him things he needs, can use... I may be able to get you a list. I am not sure what county you are in, but I have some names. When he qualifies for Medicaid, then could apply for Medicaid Waiver.

                      Please give a call to the NJ Disability Offices http://www.state.nj.us/humanservices/dds/home/
                      They should be able to help you with getting more resources available. You may be speaking to someone in Medicaid office who does not know the ropes. I can give you more info by PM as well...

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                      • Regarding feeling pressure but not actual touch, that's how I am with my neck. Below my jaw it's like my neck was shot with novocaine; it's numb but I feel the pressure when someone is shaving me. But they could cut me and I wouldn't know it.

                        The only implication I might draw is from where he can feel pressure -- the lower the better. My neck is numb, and I can't really feel anything below it, which I think is accurate for a C1-2 according to ASIA classifications (C1's have normal sensation on their face, but below the jaw, and the back of the head are where the numbness starts).

                        That said, I can somewhat tell when people are doing something to my body, because it's all connected. For example, if someone is doing range of motion on my legs, I can usually tell which leg it is and where it's going, by how the rest of my body reacts (certain movements cause my body to spasm in certain ways). But I don't feel the surface touch at all.

                        Though, yes, I'd like to feel more and (obviously) have more physical control over my body, not feeling isn't all bad. For one, I actually sleep through my bed baths, and I imagine the urine catheter isn't all that comfortable, so I'm glad I don't feel those things!

                        And, I actually incurred a broken arm from a nurse doing range of motion incorrectly (it was a not-so-humorous spiral fracture of my humerus) but I found some humor in that I couldn't / didn't feel it at all.

                        - Bill :-)
                        Wheelchair users -- even high-level quads... WANNA BOWL?

                        I'm a C1-2 with a legit 255 high bowling game.

                        Comment


                        • Hi Guys,
                          Been a while.... My brother is now off the vent night and day and has been breathing on his own for close to two weeks. His therapy has been progressing and said that he has felt some muscle movement during therapy in his biceps. He is eating well and speaking pretty good also. We are looking at a place which will serve as a kind of interim home. They typically have patients anywhere from six months to two years, continue to coordinate therapy with Kessler as he progresses, have other sci's in his age group, have daily activities and trips throughout the year and work with him towards one day living on his own. Still keeping hope alive! Thanks guys, you all have been a tremendous help. I have looked back on alot of my previous posts and I simply cannot believe all that my brother and family have gone through in such a short time and have survived with my sanity intact due largely in part to all of your help and encouragement! Fantastic bunch of people! Thanks again.

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                          • I was just thinking about you and your family Habaret.
                            I'm happy to hear things are going well and falling into place. Eating, speaking and getting off the vent big things.
                            Also good to hear there is a place for him to go and continue therapy and be while he figures the rest out. It will help that there are people his age and SCI there.
                            I am sure it is a weird feeling reading the old posts. When I look at Dave's Caring Bridge I still can't beleive it all happened.
                            Best wishes to you all!

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                            • New rehab

                              Just an update guys. My brother has been moved from Kessler to a place in Florham Park NJ called the Cheshire home. Kessler was great and I can't say enough good things about all the people there and how helpful and respectful they have been. Unfortunately his time there was up and we needed to find a new place for him to go to continue therapy. My sister and Brother in law who have been the main support system for my brother visited the Cheshire home some time ago and were very impressed by the people and and the great things they do for Sci's there. We were lucky enough to apply and for him to be accepted there. I have not been able to make it there yet to see him due to work (60hrs week rotating shifts) and my youngest sons approaching communion. Hope to see him sometime early next week. My sisters all say he is adjusting to the new surroundings. Hope still alive.

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                              • Harberrat! Thanks for the update. I was just thinking about you and your brother. I only found CCC a few months ago and do not know anyone else in our situation. When your first post came through it was like going back to day one. All of the emotions,confusion and unknown. I was so worried for you even if complete strangers!
                                I was happy to see your name pop up. Sounds like Kessler was a wonderful place for your brother. How are his spirits? Leaving rehab is a bit like leaving a safe haven. Give him good wishes from MN.
                                Glad you have some family members involved.
                                Please keep us posted on his progress.

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