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Thread: New C-4 Compete (Brother)

  1. #51
    Senior Member
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    Spring Hill , Florida
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    Any One Heard How Captain Thad's Brother Wade is Doing @ Shepherd Center in Atlanta?

    I was wondering if any one on CC has heard how Captn. Thad's brother Wade is making out & if he's still @ Shepherd Center in Atlanta? I havn't seen any posts by Captn. Thad in several weeks. I hope Wade is doing ok.
    If any one knows how Wade is doing either post it here on PM me.
    Thanks !

    Bob
    Fellow CC Member & Fellow Wheeler

  2. #52
    Capt. Thad was online here on Oct. 5th for sure, which is why I posed post #50, but no update from him...

    Evidently he was here on Oct. 22nd too, but did not post.

    I am wondering if he is not allowed to post at the moment because of security precautions due to his being in Active Duty...just a thought...
    Last edited by teena; 11-01-2008 at 09:03 PM.

  3. #53

    C4s I have worked with

    Captain Thad,

    I am very sorry to hear about your brother. I have worked with SCI for almost 30 years and it is always devastating. I currently have two persons with C4 complete injuries in our SCI Recovery Program (both diagnosed complete and years past their initial injury). Each is gaining tremendous recovery....Typically, C4 complete is completely dependent and is at Stage 0 Recovery...Both of the persons that I am currently working with began our program at Stage 0 (shoulders elevated and no triceps/biceps). Both are progressing, one with beginning biceps, one with very strong biceps now. Both have triceps coming in. Both are propping up in sitting with their arm extended and shoulder back. Kelley can now sit, righting herself, without using her arms. She also propelled a manual wheelchair for 2 hours and locked her own brakes....All progress. Now they have progressed to Stage 2 and Stage 3 Recovery and I fully expect them to continue on into Stage 4 (can get into prone prop independently), Stage 5 (can press up into extended elbows), and Stage 6 (independently get into sitting and transfer independently).....

    Anyway, please know there is hope and focusing on getting the parasympathetic/sympathetic systems into balance for the beginning of healing and then regaining structural integrity is the key. Please let me know if you have further questions...

    Kelley is here at this moment and said you could email her directly if you want to ask her questions; KGoddu8@hotmail.com.

    Good Luck,

    Susan

  4. #54
    Hi Thad,

    My experience was similar to your brother's in that my SCI also ascended "inexplicably" from a non-vent level (C5-6) to a vent-dependent level (C1-2). My injury was in 1997 and supposedly there was no test that could determine the reason my injury ascended. That all happened at my first hospital at which I stayed for a month before being transferred to Shepherd where I "rehabbed" for two months before coming home. (I put "rehabbed" in quotes because there wasn't much I could physically do, which is one reason we invented a bowling device; see my signature if interested.)

    Regarding your brother's anxiety... I too was quite anxious and didn't trust the ventilator for several months. It's a machine, and I know machines can fail, but I truly have not had one single problem with either LP-10 ventilator (I have one bedside, and one on my chair) for my ELEVEN+ YEARS that I've been using them, mostly 24/7 (though I have developed some ability to breathe by using my neck muscles to kinda simultaneously pull my chin down and chest up to take in air; I would think almost anyone who can access his/her neck muscles can develop the ability).

    I want to stress that your brother should be able to trust that the ventilators WILL give him air as needed. They also have fantastic alarms and it really isn't possible for properly set alarms to not work (Shepherd will set them properly, and once set, they won't change unless someone specifically changes them, bumping the machine accidentally won't cause them to change). I was paranoid that the vent could pop off and it might lay against a blanket or something and the alarm wouldn't go off. So, we tried simulating different "pop-off" scenarios and could NOT get the vent alarm to NOT sound. My Mom put the vent to where it was blowing directly into some blankets, practically pushed tight to the blankets, and the low pressure alarm still went off as it should. I think we'll do some more tests, just so I can relay exactly what we did to anyone interested, because it's been a while and I don't remember exactly what we did--EXCEPT I do remember that we couldn't get the alarm NOT to sound with anything we tried (meaning it worked perfectly).

    In the first few months, I would panic if the vent popped off and nobody IMMEDIATELY noticed. My panicking caused my heart to stop three times in four days at Shepherd, which is why I have a pacemaker (it was put in at Piedmont, the hospital adjoining Shepherd). But now that I'm "infinitely" more stable, I'm told my pacemaker is virtually never used; it is set to only kick-in if my heart doesn't beat 60 times per minute by itself. Getting a pacemaker might help alleviate some of your brother's anxiety, knowing that with it, his heart cannot stop.

    Also, if the vent comes off, if he does not panic, it should take roughly 40 seconds for his O2 sats (oxygen saturation level) to drop below 90, assuming he starts in the upper 90s, like 96+ which I usually am, and he should be if they aren't still trying to wean him (and if he is over the respiratory infection). I wondered how long it would take for my O2 sats to drop below 90 (anything in the 90s is considered safe, but they may purposely be keeping him in the low 90s if they are trying to get his body to supplement what the vent gives, i.e. if they haven't given up on weaning). Once I developed the ability to breathe off the vent (I can elaborate on that if interested) I wanted to see how long my O2 sats would stay in the 90s, if the vent came off and I didn't try to breathe (my breathing isn't spontaneous; I have to consciously do what I described above). That's how I determined I could go about 40 seconds without air, and keep my O2 sats above 90, and incidentally, my O2 sats would always come up QUICKLY as soon as the vent was put back on. So, since the alarm WILL go off within nine seconds at the most (that's how mine is setup; I would imagine your brother's is similar and I can tell you how to calculate that time) hopefully that info will help alleviate some anxiety your brother may have.

    If your brother is already eating, that's a positive sign. I couldn't eat for four months. How is your brother progressing with regard to talking?

    When I left Shepherd (3 months post injury) I still could only tolerate having my cuff deflated and vent volume increased (the two things required for speech) for about an hour a day. But within a week of being home, my cuff was deflated and volume increased (by 300 cc from my "cuffed" volume) 24/7--why? Because I needed to talk to train and communicate with caregivers and nurses. My need to talk helped me fight through the discomfort and dizziness to tolerate having my cuff deflated and volume increased. I would imagine your brother is similarly capable, whether he believes that right now or not. I didn't try a speaking valve for more than a year, although I believe I could have tried one sooner (that's a relatively long story, which I'll explain if interested).

    I know y'all are disappointed that your brother was not able to do the diaphragm pacemaker, however I really do not see how my quality of life would improve with a diaphragm pacemaker, and here's why...

    First, let me say that a friend of mine got the diaphragm pacemaker and he loves it, but before getting it (when he was on the vent) he didn't use a speaking valve, and I don't think he learned to initiate breaths on the ventilator, and I also don't think he used a CoughAssist machine instead of suctioning. Why are those things important? The net effect in my case is that unless they have come out with "second generation" diaphragm pacemakers that allow breaths to be initiated, then my quality of life would decrease with the diaphragm pacemaker.

    Why? Because on the vent, I can initiate a breath when I am talking and "run out of air" before I finish my sentence/thought. Using the same simultaneous "pull my chin down & chest up" technique I mentioned above (I actually do a quick version) I can initiate a breath on the vent. The pause between breaths is exactly three seconds if I don't initiate a breath, and without a speaking valve, a vent user can only speak during the time in which he/she is actually receiving a breath (which for me is exactly 1.5 seconds, and of course, the cuff must be deflated and volume should be increased). That is followed by a mandatory three-second pause, which sucks for trying to have a conversation. With the ability to initiate a breath (an action which I'm 99% sure almost anyone who can use their neck muscles should be capable of developing) that lets me shorten the three-second pause. What the speaking valve does, is it enables me to use the entire amount of air that the ventilator gives with each breath.

    The speaking valve is just a brilliant little one-way valve that allows air to flow in easily (inhale direction) but completely seals off the exhale direction. That means the air must all be exhaled out the person's mouth and/or nose--but the effect is that one has some air to speak with when the vent isn't actively giving a breath. So I can speak continuously, as long as I don't try to get real loud. I can get loud when necessary, but the louder one speaks, the more air is required, so I will "run out" of air faster if I have to talk quite loud. But that's when I will initiate a breath, and within roughly one second, I can continue speaking. With the diaphragm pacemaker, it is like having a speaking valve at all times (because the amount of air breathed-in can be used for speech) because the person's trach is sealed. What happens without a speaking valve, is some/much of the ventilator breath is exhaled back out the trach & vent circuit before it reaches the person's vocal chords, which are above the trach. Exhaling out the trach & vent circuit is why the pause between breaths is mandatory (when not using a speaking valve) because no air is around the vocal chords, which is also why speech isn't possible with an inflated cuff (the cuff is a little balloon that wraps around the trach like a ring on a finger, and when inflated, it seals the airway and forces all the air into the lungs and forces the air to be expelled via the vent-circuit; I can elaborate on that if interested).

    But, talking with my friend who had the diaphragm pacemaker, he still has to pause if he runs out of air before his chest is stimulated to take a breath. His diaphragm pacemaker doesn't have the ability (or setting) to enable the user to initiate a breath to shorten the pause in between breaths. Consequently, he has to pause occasionally, if he uses up the air given before receiving/taking another breath. I think I talk better him, when I have my speaking valve on (which is about 15 hours per day for me; it isn't good to use it when sleeping because it essentially negates the in-line humidifying device on my vent circuit, so I get a little dried out; I can elaborate on this and how we re-humidity my lungs & airway also).

    Also, the diaphragm pacemaker is battery operated. They have alarms when the battery gets low, and I think one battery lasts for a couple weeks, and my friend gets batteries delivered regularly. But still, he is dependent on those batteries. I'm dependent on the batteries in my LP-10s also (plus their external batteries) but my vents also run on standard electric power from any outlet, which also charges my batteries. I think that is a little better than only having batteries. Plus, you still have to keep the trach with a diaphragm pacemaker. I'm not entirely sure why, but I suppose it is so that one can be put back on a vent if something goes wrong with the diaphragm pacemaker.

    My friend did get the vent taken off the back of his chair, and he said he doesn't "rock" in his van when traveling nearly as much (I don't rock a whole lot; I usually tilt all the way back and my vent tray actually rests on a slightly elevated platform in my van). My friend also said his sense of smell is much better and taste is better also.

    I truly don't think my ability to taste is deficient (I am able to thoroughly enjoy good food, just like before my injury) but my sense of smell is definitely limited, though I can smell when I really want to (I have to try to take in air through my nose). I usually have no problem smelling when someone is baking brownies or something that I really want to smell, but some of my able-bodied friends are jealous that I can selectively smell (like when they change their child's diapers).

    I also mentioned the CoughAssist as a reason why I don't think getting a diaphragm pacemaker would really improve my quality of life. The reason is because with the CoughAssist, which is used on me about five times a day on average, it is easy and comfortable to expel secretions (whereas I absolutely hated being suctioned--it made me gag, I wasn't receiving air with it, and it didn't seem to be nearly as effective as using the CoughAssist largely in the manner that Shepherd uses it with vent patients, i.e. in manual mode). I can elaborate on that also (and we actually gave away my suctioning equipment about 10 years ago--and I have not had any respiratory issue that required hospitalization ever since I left Shepherd--knock on wood, and thank you to good caregivers & the Good Lord).

    Thad, I would be happy to continue sharing info, but this is long enough for one post, and it certainly would be beneficial to know how your brother Wade is progressing.

    I'm sorry I didn't see this thread until now (I was finishing school when you first posted, and I've been doing projects ever since graduating, but I want to visit CareCure more frequently).

    God bless, and here's my standard signature (which has links for my personal website, which I designed as a resource for high-level quads and vent users after my family wasn't able to find much info to help me when I was injured--I/we didn't know about CareCure; and my signature has links about our bowling device and how it can help empower wheelchair users)...

    Sincerely,

    Bill Miller :-)
    C1-2 Quadriplegic with a 206 High Bowling Game
    Co-founder of Manufacturing Genuine Thrills Inc. d/b/a MGT
    My blog: http://powerwheelchairusers.blogspot.com
    Business website: http://www.ikanbowler.com
    Personal website: http://www.lookmomnohands.net
    Wheelchair users -- even high-level quads... WANNA BOWL?

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

  5. #55
    Bill, Thanks so much for posting this. Wise.

    Quote Originally Posted by BillMiller823 View Post
    Hi Thad,

    My experience was similar to your brother's in that my SCI also ascended "inexplicably" from a non-vent level (C5-6) to a vent-dependent level (C1-2). My injury was in 1997 and supposedly there was no test that could determine the reason my injury ascended. That all happened at my first hospital at which I stayed for a month before being transferred to Shepherd where I "rehabbed" for two months before coming home. (I put "rehabbed" in quotes because there wasn't much I could physically do, which is one reason we invented a bowling device; see my signature if interested.)

    Regarding your brother's anxiety... I too was quite anxious and didn't trust the ventilator for several months. It's a machine, and I know machines can fail, but I truly have not had one single problem with either LP-10 ventilator (I have one bedside, and one on my chair) for my ELEVEN+ YEARS that I've been using them, mostly 24/7 (though I have developed some ability to breathe by using my neck muscles to kinda simultaneously pull my chin down and chest up to take in air; I would think almost anyone who can access his/her neck muscles can develop the ability).

    I want to stress that your brother should be able to trust that the ventilators WILL give him air as needed. They also have fantastic alarms and it really isn't possible for properly set alarms to not work (Shepherd will set them properly, and once set, they won't change unless someone specifically changes them, bumping the machine accidentally won't cause them to change). I was paranoid that the vent could pop off and it might lay against a blanket or something and the alarm wouldn't go off. So, we tried simulating different "pop-off" scenarios and could NOT get the vent alarm to NOT sound. My Mom put the vent to where it was blowing directly into some blankets, practically pushed tight to the blankets, and the low pressure alarm still went off as it should. I think we'll do some more tests, just so I can relay exactly what we did to anyone interested, because it's been a while and I don't remember exactly what we did--EXCEPT I do remember that we couldn't get the alarm NOT to sound with anything we tried (meaning it worked perfectly).

    In the first few months, I would panic if the vent popped off and nobody IMMEDIATELY noticed. My panicking caused my heart to stop three times in four days at Shepherd, which is why I have a pacemaker (it was put in at Piedmont, the hospital adjoining Shepherd). But now that I'm "infinitely" more stable, I'm told my pacemaker is virtually never used; it is set to only kick-in if my heart doesn't beat 60 times per minute by itself. Getting a pacemaker might help alleviate some of your brother's anxiety, knowing that with it, his heart cannot stop.

    Also, if the vent comes off, if he does not panic, it should take roughly 40 seconds for his O2 sats (oxygen saturation level) to drop below 90, assuming he starts in the upper 90s, like 96+ which I usually am, and he should be if they aren't still trying to wean him (and if he is over the respiratory infection). I wondered how long it would take for my O2 sats to drop below 90 (anything in the 90s is considered safe, but they may purposely be keeping him in the low 90s if they are trying to get his body to supplement what the vent gives, i.e. if they haven't given up on weaning). Once I developed the ability to breathe off the vent (I can elaborate on that if interested) I wanted to see how long my O2 sats would stay in the 90s, if the vent came off and I didn't try to breathe (my breathing isn't spontaneous; I have to consciously do what I described above). That's how I determined I could go about 40 seconds without air, and keep my O2 sats above 90, and incidentally, my O2 sats would always come up QUICKLY as soon as the vent was put back on. So, since the alarm WILL go off within nine seconds at the most (that's how mine is setup; I would imagine your brother's is similar and I can tell you how to calculate that time) hopefully that info will help alleviate some anxiety your brother may have.

    If your brother is already eating, that's a positive sign. I couldn't eat for four months. How is your brother progressing with regard to talking?

    When I left Shepherd (3 months post injury) I still could only tolerate having my cuff deflated and vent volume increased (the two things required for speech) for about an hour a day. But within a week of being home, my cuff was deflated and volume increased (by 300 cc from my "cuffed" volume) 24/7--why? Because I needed to talk to train and communicate with caregivers and nurses. My need to talk helped me fight through the discomfort and dizziness to tolerate having my cuff deflated and volume increased. I would imagine your brother is similarly capable, whether he believes that right now or not. I didn't try a speaking valve for more than a year, although I believe I could have tried one sooner (that's a relatively long story, which I'll explain if interested).

    I know y'all are disappointed that your brother was not able to do the diaphragm pacemaker, however I really do not see how my quality of life would improve with a diaphragm pacemaker, and here's why...

    First, let me say that a friend of mine got the diaphragm pacemaker and he loves it, but before getting it (when he was on the vent) he didn't use a speaking valve, and I don't think he learned to initiate breaths on the ventilator, and I also don't think he used a CoughAssist machine instead of suctioning. Why are those things important? The net effect in my case is that unless they have come out with "second generation" diaphragm pacemakers that allow breaths to be initiated, then my quality of life would decrease with the diaphragm pacemaker.

    Why? Because on the vent, I can initiate a breath when I am talking and "run out of air" before I finish my sentence/thought. Using the same simultaneous "pull my chin down & chest up" technique I mentioned above (I actually do a quick version) I can initiate a breath on the vent. The pause between breaths is exactly three seconds if I don't initiate a breath, and without a speaking valve, a vent user can only speak during the time in which he/she is actually receiving a breath (which for me is exactly 1.5 seconds, and of course, the cuff must be deflated and volume should be increased). That is followed by a mandatory three-second pause, which sucks for trying to have a conversation. With the ability to initiate a breath (an action which I'm 99% sure almost anyone who can use their neck muscles should be capable of developing) that lets me shorten the three-second pause. What the speaking valve does, is it enables me to use the entire amount of air that the ventilator gives with each breath.

    The speaking valve is just a brilliant little one-way valve that allows air to flow in easily (inhale direction) but completely seals off the exhale direction. That means the air must all be exhaled out the person's mouth and/or nose--but the effect is that one has some air to speak with when the vent isn't actively giving a breath. So I can speak continuously, as long as I don't try to get real loud. I can get loud when necessary, but the louder one speaks, the more air is required, so I will "run out" of air faster if I have to talk quite loud. But that's when I will initiate a breath, and within roughly one second, I can continue speaking. With the diaphragm pacemaker, it is like having a speaking valve at all times (because the amount of air breathed-in can be used for speech) because the person's trach is sealed. What happens without a speaking valve, is some/much of the ventilator breath is exhaled back out the trach & vent circuit before it reaches the person's vocal chords, which are above the trach. Exhaling out the trach & vent circuit is why the pause between breaths is mandatory (when not using a speaking valve) because no air is around the vocal chords, which is also why speech isn't possible with an inflated cuff (the cuff is a little balloon that wraps around the trach like a ring on a finger, and when inflated, it seals the airway and forces all the air into the lungs and forces the air to be expelled via the vent-circuit; I can elaborate on that if interested).

    But, talking with my friend who had the diaphragm pacemaker, he still has to pause if he runs out of air before his chest is stimulated to take a breath. His diaphragm pacemaker doesn't have the ability (or setting) to enable the user to initiate a breath to shorten the pause in between breaths. Consequently, he has to pause occasionally, if he uses up the air given before receiving/taking another breath. I think I talk better him, when I have my speaking valve on (which is about 15 hours per day for me; it isn't good to use it when sleeping because it essentially negates the in-line humidifying device on my vent circuit, so I get a little dried out; I can elaborate on this and how we re-humidity my lungs & airway also).

    Also, the diaphragm pacemaker is battery operated. They have alarms when the battery gets low, and I think one battery lasts for a couple weeks, and my friend gets batteries delivered regularly. But still, he is dependent on those batteries. I'm dependent on the batteries in my LP-10s also (plus their external batteries) but my vents also run on standard electric power from any outlet, which also charges my batteries. I think that is a little better than only having batteries. Plus, you still have to keep the trach with a diaphragm pacemaker. I'm not entirely sure why, but I suppose it is so that one can be put back on a vent if something goes wrong with the diaphragm pacemaker.

    My friend did get the vent taken off the back of his chair, and he said he doesn't "rock" in his van when traveling nearly as much (I don't rock a whole lot; I usually tilt all the way back and my vent tray actually rests on a slightly elevated platform in my van). My friend also said his sense of smell is much better and taste is better also.

    I truly don't think my ability to taste is deficient (I am able to thoroughly enjoy good food, just like before my injury) but my sense of smell is definitely limited, though I can smell when I really want to (I have to try to take in air through my nose). I usually have no problem smelling when someone is baking brownies or something that I really want to smell, but some of my able-bodied friends are jealous that I can selectively smell (like when they change their child's diapers).

    I also mentioned the CoughAssist as a reason why I don't think getting a diaphragm pacemaker would really improve my quality of life. The reason is because with the CoughAssist, which is used on me about five times a day on average, it is easy and comfortable to expel secretions (whereas I absolutely hated being suctioned--it made me gag, I wasn't receiving air with it, and it didn't seem to be nearly as effective as using the CoughAssist largely in the manner that Shepherd uses it with vent patients, i.e. in manual mode). I can elaborate on that also (and we actually gave away my suctioning equipment about 10 years ago--and I have not had any respiratory issue that required hospitalization ever since I left Shepherd--knock on wood, and thank you to good caregivers & the Good Lord).

    Thad, I would be happy to continue sharing info, but this is long enough for one post, and it certainly would be beneficial to know how your brother Wade is progressing.

    I'm sorry I didn't see this thread until now (I was finishing school when you first posted, and I've been doing projects ever since graduating, but I want to visit CareCure more frequently).

    God bless, and here's my standard signature (which has links for my personal website, which I designed as a resource for high-level quads and vent users after my family wasn't able to find much info to help me when I was injured--I/we didn't know about CareCure; and my signature has links about our bowling device and how it can help empower wheelchair users)...

    Sincerely,

    Bill Miller :-)
    C1-2 Quadriplegic with a 206 High Bowling Game
    Co-founder of Manufacturing Genuine Thrills Inc. d/b/a MGT
    My blog: http://powerwheelchairusers.blogspot.com
    Business website: http://www.ikanbowler.com
    Personal website: http://www.lookmomnohands.net

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