Announcement

Collapse
No announcement yet.

New C-4 Compete (Brother)

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    #31
    Sounds like he needs an anti-anxiety medication not just an antidepressant. Is their psychologist working directly with him on relaxation techniques during these tries on the portable vent?? They should.

    (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.

    Comment


      #32
      Originally posted by Captain Thad
      I know. They put him on the portable vent and he tried, tears were coming down his face, and he said he could not breath. He goes into a panic attack and passes out, even with good oxygen levels, and everything falls to crap.They say it's in his head. He's on anti-depressants and pain medication, there is nothing else they can do, but they are trying. We are supporting him and letting him know that he can breath on his own, but he just doesn't believe it...definitely not on the portable vent.
      Hi Captain, I am so sorry about what your family is going through, specially you brother.. as other people have pointed out, it will get better with time...

      I have a much lower injury, but have suffered from panic attacks, particularly during the initial stage of the rehab. I would like to help by saying the following:

      -panic attacks may be "all in the head", but for the person experiencing them, they are very real.. actually, they ARE real, because your whole body is reacting physically to a perceived treath..

      - during the attack, your body believes it is going to die and no amount of reassurance from anyone will convince you otherwise. im afraid your brother will not believe anything anybody tells him about breathing, because, at least in my experience, it is as if your brain (reasoning abilities) is bypassed by the body's own anxiety mechanism.

      - panic attacks are horrendous... there are really no words i could use to explain the worst ones i have had.. I really feel for your brother.. they are very traumatic and they leave you completely physically and emotionally exhausted, for days afterwards.. in my experience, the infections he is having may be made worse by the panic attacks. Unless you find a way to control the anxiety (and stop its physiological consequences on the immune system), there is no chance for the body to start healing.

      -Some medications make panic attacks worse in some people. I had a bad reaction to Xanax (a tranquilizer) when I was in the ICU and was intubated. I thought that I was going mad. Zoloft makes my anxiety go to the roof. Is there any chance your brother is having a bad reaction to any medication? I know he must be taking lots of drugs, but can you explore this with the Drs?

      - PLEASE get some help for his anxiety as soon as possible. Get a psychologist or psychotherapist that specializes in severe anxiety disorders to work with him everyday, starting now.. I can not tell you how important that can be for your brother. Deep relaxation techniques and Cognitive Behavioral Therapy can help a great deal.

      Please ask anything if you need.. all the best.
      Last edited by agnes; 19 Aug 2008, 8:23 AM.

      Comment


        #33
        He's taking Lexapro, Adavan, and a few others. Like I said earlier, the people at Shepherd have said that they have never experienced anxiety to this level and are actually learning from him. I think my brother was taking Zoloft, but it didn't work so well for him (before the accident). He had attacks before the accident, and sometime felt like he was dying, and breathing would become a problem then. I can't imagine the effects of anxiety as a C-4 complete on the vent. I just pray and let him know that I'm there for him, and push him.

        Comment


          #34
          I can't imagine the effects of anxiety as a C-4 complete on the vent.
          Me either. He must be terrorized! God bless him.

          Is he getting psychological help with his anxiety about the vent particularly?
          sigpic

          Comment


            #35
            Captain Thad, my 19yr old son CJ had the same issues when being weaned off the vent. He had such panic attacks that he would tell me he was dieing and tell me he loved me. They had to physically tie him down because he would flail his arms around while having the attack. We were told it was a phase but it freaked me out big time. I cried so much during that time, it was tough but we got through it. The doctors told me that it was mostly in his head and that it was also because he was so addicted to the drugs that they had him on and while trying to wean him off the vent they were weaning him off the drugs as well. Adivan was the anxiety med they were using on my son. It took a month and a half to wean him off the vent. He was on the vent a total of 3 months so have faith, it can happen. My mother in law used to tell me that you can only eat an elephant one bite at a time, if you try to eat it all at once it is way to overwhelming.... My thoughts and prayers go out to you, we know exactly what ya'll are going through (unfortunately). Your brother will figure it out in his own time.

            Elaine- CJ's-MOM

            Comment


              #36
              Thanks

              Thanks everybody for the responses and putting things in perspective.
              Well, my brother had a "I told you so" moment last week. He kept tell the nurses that his panic attacks are in response to not being able to breath, not the reason, like they have claimed. The nurses have said the his inability to get off of the vent is in his head, and has to do with his anxiety. For the first time, without a panic attack, they took my brother off of the vent and he just sit there as calm as could be, and he's looking around the room, rolling his eyes........and his chest is not breathing - at all. My brother is like, I TOLD you so, and he tell the nurses to go and tell the doctors that "it's not my head".
              Anyway the pulmonary doctor came in on saturday and my brother was given a function test (I'm not sure it this measures capacity, or what), but he was a "250" when he arrived at Shepherd 5 weeks ago. Now he's a 80. Everyone is confused now. He's getting worse.......and my brother is saying that he is loosing feeling. He had feeling down to his sternum and right above his nipples. Now he just has the top of his shoulders, but that is consistent with his C-4 complete injury.

              Comment


                #37
                As I was writing, my mother wrote me this email. What is going on?????? Dammit!!!

                Thad – They ran a test on Wade’s diaphragm this morning since his O2 Sats drop every time they take him off the vent. And it is not responding and it was working when he first arrived. He was able to push out 200 on his Vital Capacity tests and now he can’t reach 100. They are talking to him about implanting a device in diaphragm. Or he will never be off the vent. Even with device, he will most likely have trach for a while longer which means oxygen and suction machine.

                He is presenting more like a C3. Can you put out on the forum – if this has happened to anyone before and what the cause was. Shepherd therapist seem puzzled. Makes me wonder if Wade wasn’t right all along when he said something was wrong with screws. They xrayed him though..

                Call me later and I can fill you in. You can call Colleen but she is really teetering on the edge of a emotional breakdown and I am trying to stay here thru Friday and give her the weekend off. I am remote next week but I am really questioning if I can keep this job now that they want me here 3 wks/month. This is just too hard.

                Comment


                  #38
                  Captain, Im really sorry about what is going on.. I wish I could help with something, at least with information about what to do, but I dont have any.

                  Hopefully the nurse or dr wise will comment soon. I will meditate (pray) sending you, your brother and the rest of your family strenght.

                  Just one thing: if he is losing fuction or feeling, something must be going on!

                  Comment


                    #39
                    See my response to your private message.

                    (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.

                    Comment


                      #40
                      The latest

                      My sisters update, because I'm at sea. My brother is now classified as a C-3.



                      I want to share a bit of disconcerting news that Wade received from his physicians this past Monday. As you will recall, he was in the process of weaning off the ventilator in the form of adjustments to the machine's settings that were gradually allowing him to breathe on his own. Last week, he was at the point where he was to be taken completely off the vent for 5 minutes several times a day. From there, the amount of time off the vent was to be grdually increased. However, Wade's body could not even tolerate the 5 minutes off the vent as his diaphragm was not contracting to expand the lungs and initiate a breath. A fluoroscopy of the diaphragm was performed 2 days ago, which provided a result of no diaphragmatic activity. At present, vent weaning has been halted and we were told to prepare to bring him home with his ventilator.
                      Obviously, this latest development is disappointing to say the least. We are also very confused as to how this could have happened as we have been told from everyone here at Shepherd and by docs at USA Medical Center in Mobile that he would be able to eventually wean off the vent. We assumed that all necessary testing had been done to validate that prognosis, and at this point, we are all still somewhat confused as to what has happened?? We are scheduled to have a meeting with his Care Team tomorrow afternoon, and will hopefully get some clarity.
                      But, regardless of how we got here, we are here. "Here" being that presently Wade needs a ventilator to breathe and I am suddenly getting hours of one-on-one training with the Respiratory Educator on how to care for his tracheostomy, manage his vent settings, etc....The "prepare" part of the spinal cord injury credo - "hope for the best, prepare for the worst" just got much more complicated and we will need even more help financially than originally thought as a home care attendant in addition to myself is now absolutely a necessity.
                      Now, there are 2 IMPORTANT things to mention here:
                      1) Wade's spirits are good, despite this latest stumbling block. He, and the rest of the family, absolutely do not view this as the end of the road but rather just something to overcome. (And, boy are we getting skilled at overcoming!!) His appetite has been full-on(pizza, burgers, fries...) and he recently asked me to get a hairdresser to come give him a trim. The fact that he has started to care again about his physical presence is a really good sign of a person's emotional state.
                      2) Wade has been offered to be one of the very first patients, post-clinical trials and FDA approval, to receive a Diaphragmatic Pacer. This will work in much the same way as a cardiac pacemaker. To read more about it, copy and paste the following link from Shepherd's news section of their site into your browser:
                      http://www.shepherd.org/news/media/press/36.asp


                      What this means is that Wade may get diaphragm function back(trials on patients his age garnered great results)! This pacer operation may take place anywhere from a few weeks to a few months depending on several factors, with the primary ones being Wade's health being stable and his insurance agreeing to pay. (Please send good thoughts about these things) You may even recall that actor Christopher Reeve was involved inintial testings of this device some years ago.


                      I promise to keep you all up to date as the pacer operation becomes more of a definite and of course, in the meantime, I also hold the belief that all of our love, along with some divine intervention will send a wake-up call to the diaphragm!!!

                      Comment


                        #41
                        Amen! You have my prayers! I'm glad his spirit is getting better.
                        sigpic

                        Comment


                          #42
                          Still a challenge

                          Why is it this hard? The Shepherd Center has apologized to my brother for getting his prognosis wrong. They have been trying to vent wean him, and got real aggressive over the last several weeks. After being on CPAP breathing, and my brother refusing to use the portable vent, they have been saying that his anxiety was causing the problems. The Shepherd Center decided to wean him from the big vent because of the refusal to get on the portable....and there was a possibility of having insurance issues by refusing suitable treatment. He simply couldn't breath, but this was all apparently in his head according to all of the specialist. Finally, after my brother changing blue and his sat levels dropping when taken off the vent completely did the "care team" realize that there might be something wrong and they might need to check his diaphram. Well, his diaphram wasn't working and after days, they are saying that it never worked. They are investigating this, but seem to think when he was in ICU, his chart indicated that he had a vital capacity of 500 might have been a mistake and lead to the decision to vent wean in the first place. Meanwhile, my brother has been stuck in his room for the last 5 weeks at Shepherd as every other patient on the 2nd floor has been mobile and getting better, my brother hasn't been mobile at all because he was misdiagnosed and refused to get on the portable vent on such low settings. Vent weaning has been cancelled at this point. There is more concentration on adaptive technology and they'll try to put him on the portable vent (with the appropriate settings this time).
                          It took the nurse and my sister 40 minutes to suction my brother today, and he was sooooo cold. His teeth were chattering like he was in a deep freeze, but his temp was good and vitals were good....I guess this is part of it. His body will convulse, almost like a seizure of the body, and he is functioning more like a C-2/C-3....but he was told that he would (without a doubt) be vent weaned 6 weeks ago and he was a C-4.

                          I really don't get the big picture here, but comparatively to other SCI, I don't see it getting worse than this without being dead.

                          Comment


                            #43
                            So sorry he has had to go through all of this, but it is time to move forward, learn how to operate the vent and keep him healthy, finish his rehab, get the right equipment and home modications done, and get him home.

                            Shephard is still one of the best places in the country for this. Because they admit they made an error, they also should be advocating with his insurance to extend his stay their due to the time wasted to date.

                            While it may seem it could not be worse, he has his brain going for him. Those (including many returning from Iraq and Afghanistan) who are both brain damaged and vent dependent due to a high level SCI would probably be glad to trade places with him, as would their families with you.

                            I know that doesn't help much right now, but it may down the road. Many people live active lives on a ventilator, including many on these forums. In addition, he may be a candidate down the road for a diaphragmatic stimulator.

                            (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.

                            Comment


                              #44
                              Captain,

                              I was injured in 1979 at the age of 16 years old. I was diagnosed as a C3-4 SCI and spent over a year in rehab. At the time, I was on a ventilator 24 hours/ day with a cuff-less trach. Once I started to feel better/stable and get on a regular schedule of therapy/exercise I started to decrease the time on the vent. Although, I no longer need my vent, I do use it for a few hours at night. Good luck to your brother, my prayers are with you.

                              Comment


                                #45
                                Thanks.

                                Several things are going to happen next week. Shepherd offered to my brother to be the first pacer surgery patient, post trial. We have to wait for blue cross to approve the surgery, but they can't even test the phrenic nerve until after approval _ So we don't even know if he's a good candidate yet. I would have thought the test would be first, because it would be a moot point having to convince insurance if his phrenic nerve is damaged. There isn't even an insurance code yet. This would be something weeks or months down the road because he had several infections already, including MRSA, and he has to be infection free for a certain period of time

                                They did order a wheelchair for my brother, fire engine red with head lights on the bottom....his request.

                                Our mission, as SCI-Nurse alluded to, and our goal next week, is to regain wasted time in rehab. I think this will happen, and Shepherd also reiterated that my brother had rehab that he would have never gotten at his level.

                                Comment

                                Working...
                                X