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New C2 SCI in Jackson MS

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    #16
    Well, we are home now and getting into a daily routine. Adam is still in very good spirits but is starting to get a litte bored. We just got word from Shepherd that he will be going back June 7th to be tested to see if he is a candidate for the pherenic nerve pacer. If all works out, he would have the surgery the following week. So say some prayers, he/we would love to see him get off the vent. Once we get a van, we will be able to get him out more and do some things, but right now we just do the daily stretching and exercises and massage. He has a great appetite so we have fun cooking and having family meals together. Well, thats about it, just wanted to check in and give you all an update. Thanks for all the support and information that all of you have shared with us.

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      #17
      Be patient with weaning him off the vent. They told me my son (C3/4 complete)would NEVER be off the vent. I knew he could. He was in Rehab for 6mos. after his accident & about 2 months after he got home we made it our mission to get him off. We actually did it on our own because every doctor I went to "tap danced" around the whole idea of taking him off. Took a couple of months to be fully off, but he did it. He was on it for 1 year total (from time of injury to time of wean).Don't listen to everything they tell you.When he got off we went back to the hospital he was in to visit the doctor (who told me he would be on forever), it was sweet!!LOL LOL. Think positive, be patient, and keep a sense of humor, it can be done!

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        #18
        Just wanted to share some updates on our son Adam. We just returned from the Shepherd center where he went through a series of tests to see if he was a candidate for the diaphragm pacer. Everything went great and they said he is a perfect candidate! So we head back to Atlanta on Saturday and he will have the surgery on Monday the 19th. We are all so excited. They said because of his age and the fact that he is in such good shape (other than his injury) that he will probably wean off the ventilator in about 10 weeks. They just got FDA approval at Shepherd so Adam will be the very first to receive the pacer there. If anyone else has received the pacer from the Cleveland Clinic we would love to hear from you.
        Other than that, he is adjusting very well being at home. We got a van so he can get out and about now, we are loving that. And just yesterday we discovered that he can move his left thumb! So great things are happening around here and I just had to share with you. Thank you to everyone who has PM'd us with your kind words and encouragement. Hopefully we can get this dragon software figured out and Adam can get on here himself.

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          #19
          Much good news. Yayyyyy!!!
          Blog:
          Does This Wheelchair Make My Ass Look Fat?

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            #20
            Back from Surgery.....

            Well we made it back after surgery and also after another trip to have the battery hooked up to the pacer so that we can start the weaning process. It really is amazing technology and so great for anyone on a vent to have an option. Anyway, they first hooked him up and he was only able to stay off the vent for about 4 minutes. He had a mucas plug almost immediatley becasue the lower lobe of his lungs were stimulated for the first time and that broke some secreations loose. The next time was 15 mins. They told us once we get home just go little by little. We measure his tidal volumes 3 time during each session to make sure his is getting high enough volumes to continue. We have been home now for 2 days and he is already up to 1 hour sessions 4 times a day. The doctor said the record now to wean off the vent completely is 2 weeks 2 days, so of course Adam is going to try to break that record. He gets really tired and sore though using the pacer. I guess it is because he is exercising muscles that havent been used for 4 months. But all and all he is doing great. SuzieQ do you have the diaphragm pacer or the phrenic nerve pacer? Are you off the vent 24/7 now? Thanks to everyone for all your prayers and well wishes from this forum. This really is a great place for everyone who is a SCI or is a caregiver or friend of a SCI. You guys are awsome!

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              #21
              This is very nice to hear. We know what hard work Adam is doing; being in good physical shape before the SCI really makes a difference. Sounds like he has a good attitude, that also helps a lot.

              Best wishes to him and you folks - it isn't easy for any of you, and I hope you are taking care of yourselves, too.
              - Richard

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                #22
                Glad to hear everything went well with the surgery.....

                I have no doubt he will be the one to break the record!!!!!!! A little determination goes A LOOOONNNNGGGG way.

                Good luck and I bet Adam is glad to be home. It will speed his recovery.

                Keep updating.
                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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                  #23
                  Great news! Keep us updated with his progress.

                  (KLD)
                  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.

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                    #24
                    What a strange way of weaning off the ventilator. Here in Belgium, you have to stay under the supervision of a respiratory therapist during the weaning process. It’s not about records here, it’s about not getting diaphragm fatigue during weaning. Nevertheless, good luck to him, I wish you all the best!!

                    rh

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                      #25
                      They are similar, but different. The phrenic pacer (the older technology) wraps a wire around the phrenic nerve and stimulates the nerve. This means that you must have an intact spinal nerve from the diaphragm to the cord at C3-5. Many people do not have this due to their cord damage, so are not phrenic nerve candidates (Christopher Reeve was in this group).

                      The diaphragmatic pacer is newer, and does not require an intact phrenic nerve because it directly stimulates the muscle of the diaphragm, which is where the electrodes are implanted. This makes is fesible for many more people, and was the reason that Christopher Reeve was one of the first people to get one.

                      (KLD)
                      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.

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                        #26
                        Hey Suzy,
                        I think from what the doctors were explaining to me, that the phrenic nerve pacer and the diapragm pacer are different. The diaphragm pacer that Adam received was a very non invasive surgery where they implanted 5 wires directly on to his diaphragm. The wires come out of his skin at the right side of his chest. The are very small, almost like thread. We hook a battery pack about the size of a TV remote up to the wires and turn him on. Its like a e-stem where the wires stimulate his diaphragm allowing him to take a more natural breath on his own. Is this what you have? I looked up phrenic nerve pacer and it was very different but I think it has very similar results. We are on our 4th day of weaning today and our goal is to be off the vent for 2 hours each session. We have to take an hour rest period in between sessions for his diaphragm to recover.

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                          #27
                          I'm not sure, I know that the only place they did his type surgery was at the cleveland clinic in Ohio, and Adam was the first to have it outside of that hospital, he went to the Shepherd Center in Atlanta. He is also only the 27 patient to receive this technology, Christopher Reeves was the third. I think, but I'm not 100% sure, that the device Adam has doesn't interfere with the phrenic nerve at all, only the diaphragm. Doesn't yours stimulate the phrenic nerve? I'm sure both are great, I think the big draw to the one Adam has is that the surgery was litterally 4 tiny cuts to implant the wires laprscopicly and there was really less than 24 hours recovery time. In fact we drove back to Mississippi (7 hour drive) the day after his surgery and he felt great. How does this compare to what you had to go through?

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                            #28
                            Great news to share! Adam is completely off the ventilator! YIPEEEEE.....He is so excited. It only took 7 days to wean him once we started the process after the diaphragm pacer was implanted. He is so relieved and he says he can breath a whole lot better now. His Dad and I are happy because we don't have to deal with all the tubes now during transfers. The doctors predicted he would wean pretty quick, but they are even surprised about how quickly he did it. Just goes to show what determination and a good attitude will do. We are so proud of him. Now our next big goal is to figure out this Dragonly speaking software so that Adam can get on the computer himself and meet all of you great people.
                            I think we need to hire an assistive technololgy person to come to the house, we just can't get it to work.

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                              #29
                              The phrenic pacer is a lot like the pacemaker heart patients have been using for years. Hopefully it will become the standard for everyone who needs one- i.e.get cheaper and more available.

                              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.

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                                #30
                                It usually takes several weeks to months- conservative management when weaning so nothing will go wrong and no complications.Need to build up that diaphragm muscle.

                                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.

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