- An Overview of My Care -
 

This page started out as a long reply to an e-mail as you'll see below.  It tells a lot about my care, and actually gives a pretty detailed overview of the primary aspects of my care (respiratory, bladder / urinary, general quad care, and a little more).  Between this page, and the "details of my care" page, that should give anyone a solid idea of what my care entails, some of which could be beneficial for a high-level quadriplegic and/or ventilator user.  I have been quite healthy (knock on wood and thank you God:) considering I'm a vent-dependent quadriplegic, which means we must be doing something right with the below routines.  I incorporated what the sender wrote into my replies below, so this gives the whole "conversation."

If you're a ventilator-dependent quadriplegic (or a caregiver for one) I think you will find everything here interesting and perhaps useful, but if not, and you're only interested in a certain category, here are direct links:

     Healing Pressure Sores (and preventing them)
     Respiratory Care [UPDATED 9/17/2008]
        - An Aside on Homeopathy (an alternative medicine that's my second line of defense)
     Bladder / Urinary Care
     General Quad Care (bathing, bowel maintenance, physical therapy, etc)
        - An Aside on Paralysis "Cures"


In a message dated 1/4/07 12:18:35 PM Eastern Standard Time, RN Beth writes:

>  Hello Bill, Greetings!  Thank you for the warm wishes! They are
>  very much appreciated. I wish you a Happy New Year too!
>  I have a question that is troubling me. Many times I get the
>  inspiration you may know the answer, or at least an educated
>  opinion. I wish you knew how much time and money is spent on able
>  bodied people debating the needs of quads. I hope you don't mind,
>  but I have quoted you in high profile meetings where a lot of money
>  is involved. AND don't worry, I do pass on your web site.

.......Hi Beth, I don't mind.  If someone has specific questions, they can e-mail me directly.  I have opinions on certain quad things, but I certainly don't know everything and I'm not afraid of saying "I don't know" if that's the case.

>  So, here is the next great debate:
>   In the issue of non-healing pressure sores which is most effective
>  and at what percentage compared to other variables?
>   
>  1)  Specialty air mattress
>  2)  Assist with frequent turns
>  3)  Being up and about
>   
>  I'm guessing (no idea if I'm close:) 1) 60  2) 10 3) 30
>  Am I close? Each one has a cost on this planet and I need to
>  recommend the best bang for the buck.

.......Fortunately for me and perhaps unfortunately for you, I don't have much experience with pressure sores.  Here's what I can tell you... I was on a super expensive and fancy bed during my initial hospitalization after my accident.  It was supposed to prevent pressure sores, without the need for turning.  However, I got a pressure sore from that bed and/or from not being turned.  I eventually went to a relatively regular hospital mattress, with relatively frequent turns, and the sore healed.  Your number 3 doesn't make sense for quads, we can't really get up and about; unless you mean being in the chair and doing things.  Incidentally, I haven't had any pressure sores since my initial hospitalization over 8 years ago; doing weightshifts while in the chair, i.e. tilting or reclining all the way back for a minimum of one minute EVERY half hour, is extremely important (click here for the importance of weightshifts).

The BEST way to heal an open pressure sore is to prevent red areas (from pressure) from becoming open sores.  Besides weightshifts and turning, an ointment called Lantiseptic (available from most pharmacies / drug stores) is good to apply to areas that are red from pressure (technically I think areas that are red from pressure are stage one pressure sores; such areas are usually seen on elbows, heels, one's sacrum, and other bony prominences -- it's generally wise to pad / cushion such areas before redness develops, or keep all weight off such an area when possible). 

Anyway, bed wise, I'm pretty sure this link is for the mattress I use.

>  Also:
>   We had said before that you would fill me in on all the primary
>  details about your routines in having excellent health. Remember I'm
>  an old veteran nurse. Any detail you share is for the intention of
>  letting someone else know: Hey, I see you're having health issues
>  with xyz, I have some recommendations about how maybe you could
>  better contain the problem...

These might not work for others, but as a C1-2 quadriplegic on a vent, here are my basic routines
(respiratory, bladder / urinary, general quad care, and a little more):

RESPIRATORY CARE:

Trach care twice a day.  This requires changing the dressing around the trach (I get a 4 by 4 drain sponge at night, and a 2 by 2 IV sponge during the day; the smaller dressing looks better and by alternating sizes, it's easy to remember/determine if trach care has been done).  We clean around the tracheal stoma with a normal saline & peroxide solution (approximately 3 parts saline to 1 part peroxide) using Q-Tips, then apply bag balm (available at drugstores, pet stores, and in the pet section at Wal-Mart for about $5) fairly liberally around the trach and stoma with a Q-Tip.  Bag balm works.  During a bronchoscopy, my ENT (ear, nose, and throat -- for people who read this on my website later:) doctor's nurse remarked "you have the nicest tracheal stoma I've ever seen!"

Upon getting in bed, I receive 5 cc's (a cc is essentially the same as a ml) of Broncho Saline (240 cc of Broncho Saline can be purchased on the Internet and delivered for a total price of less than $9 per bottle) by removing the vent circuit and squirting the Broncho Saline in through the inner canula.  Shortly thereafter, we use the CoughAssist (in-exsufflator) and change the inner canula when finished (my inner canulas are technically disposable, but we have a cleaning system and we use/reuse 5 in a rotation every month).  Then we do a nebulizer treatment (twice a day; when I get in bed and before I get out, which is also when we do trach care).  Before the nebulizer treatment, I receive another 5 cc's Broncho Saline.  The nebulizer treatment consists of 0.5 cc of acetylcysteine 20% solution (generic for Mucomyst and/or Mucosil) mixed with one cc Broncho Saline, all delivered via nebulizer.  The Broncho Saline and nebulizer treatments loosen my secretions which tend to dry out when I wear my speaking valve all day (the Passy Muir speaking valve negates the effect of the artificial nose/heat & moisture exchange unit on my ventilator circuit, which is why I don't wear the speaking valve while sleeping, so I can re-humidify my airway). 

UPDATE 5/28/2008: I used to use Broncho Saline as described above, but now I use a total of 15cc (or 15ml) instead of 10cc (or 10ml) of sterile saline with my twice-daily routines because my ENT doctor mentioned that my airway looked dry after he performed a bronchoscopy (he actually mentioned it each time after two separate bronchoscopies). Also, it's actually cheaper to buy (a case of 1000) 5ml "saline bullets" HERE. I switched saline products because I was having a hard time getting Broncho Saline delivered for about $9 total per can. Plus, at least one or two out of 10 of the 240cc cans were routinely defective (wouldn't pump). But even if every can worked perfectly, the saline bullets by the case are cheaper -- plus they are GUARANTEED to work (they are just little plastic tubes with twist-off tops, and are dispensed by squeezing) -- there's no pump mechanism that can fail. Brilliant! :-)

Respiratory continued (as if the above update wasn't there:)...

After nebulizing, we will again use the CoughAssist (I am NEVER suctioned, the CoughAssist is a superior alternative to suctioning -- check my website, www.LookMomNoHands.net, for details on the "Life with an SCI" page) and again we will change the inner canula when finished with the in-exsufflator (CoughAssist).  We don’t always change the inner canula after in-exsufflating and generally don’t after in-exsufflating when I’m in my chair, unless it’s necessary, i.e. the secretions didn’t get pulled through the inner canula, they got partially stuck and are impeding the airway enough that I can feel a difference.  Usually changing the inner canula will solve this problem, but in an emergency (if the trach itself is occluded), a spare trach should be available (a clean used trach should be in a “trach kit” on the wheelchair and above the bed) to replace the occluded trach and caregivers should all at least be briefed on how to change a trach, although in the more than 8 years I’ve been injured, I don’t recall requiring an emergency trach change (more on this later).

The CoughAssist (which is the updated version of the in-exsufflator) is used as needed, approximately 5 or 6 times a day, but 10 times wouldn't be a big deal.  Any time I feel or hear secretions, especially if they are "bothering" me (making me attempt to cough, or affecting my speech) then we'll in-exsufflate.  Again, we don't always change the inner canula afterward, only if we think the secretions didn't come out clean (but we do change it like mentioned above, as part of the bed routines).  Broncho Saline beforehand is optional when in-exsufflating during the day.  I tend to be pretty well hydrated, therefore my secretions don't usually get overly sticky or dry.  The CoughAssist machine efficiently and effectively clears secretions using air only (it's a noninvasive procedure, compared to suctioning).  Again, see the above referenced page on my website for more info on in-exsufflating.

That's essentially my daily respiratory care.  To further loosen secretions after nebulizing, we'll use the ambu bag (squeeze hard and give quick FULL breaths, about 10 or so) and also do CPT (which stands for chest physiotherapy or chest percussion therapy, i.e. cupped hands "pounding" on my chest).  I have two LP-10 ventilators, two in-exsufflators, and two ambu bags (one of each is for bedside use, the others are for chair use).  We change my vent circuits and disposable tubing associated with the aforementioned products every two weeks.  Initially we were changing tubing every week, but every two weeks seems sufficient, especially if caregiver's hands are clean before handling any tubing (or respiratory equipment).  Actual hand washing is important, but for quick cleaning when hands aren't really "dirty," we keep hand-sanitizer in easy pump bottles around, and also baby wipes are good for quick hand cleaning, when hands aren't really "dirty."

The most important times to have clean hands is before handling respiratory equipment or doing any respiratory procedures, and before AND after cathing or adjusting the urinary catheter.  But, generally, a caregiver should be careful about keeping his or her hands clean, and use a baby wipe or hand-sanitizer after rubbing his or her nose, or touching anything that is "less than clean."  I might sound paranoid, but I haven't had a respiratory infection or urinary tract infection (UTI) in well over 3 years (or anything which would require an antibiotic) and part of that is because my caregivers are careful with their hands (friendly reminders help:).  That said, occasionally an antibiotic is necessary and I’m not too stubborn to take it (especially if I agree with the doctor’s assessment:).  However, my first line of defense (besides a pretty healthy diet supplemented by colloidal vitamins & minerals and the other beneficial practices expressed here) is… homeopathy. 

(AN ASIDE ON HOMEOPATHY:)

Homeopathy is an alternative method of medicine which treats the problem based on the symptoms; it doesn’t simply target the symptoms like certain aspects of traditional medicine.  One of the best things about homeopathy is how inexpensive the remedies are, not to mention that they won’t interfere with any other medication you may be taking, so it doesn’t hurt to try a homeopathic remedy.  I mentioned UTIs above, well at first sign of any bladder or urinary problem, I take a homeopathic remedy called Cantharis, which usually stops the UTI in its infancy, before it becomes a problem requiring an antibiotic.  Cantharis can probably be purchased from most health food stores and some pharmacies for under $10 without a prescription.  Cantharis is also probably in every homeopathic “starter” kit; the kits usually contain between 10 and 20 of the most common remedies, and likely cost between $40 and $100 dollars (they usually contain a booklet which is a quick guide to homeopathy; we've purchased these kits HERE).  Most doctor visits cost in excess of $100 AND you usually have to buy prescription medicine afterwards!  (That said, quads need to find a doctor who will familiarize himself or herself with the quad’s medical needs and be available if needed.)

I would like to think the preceding paragraph makes it pretty clear that families can benefit from having a basic homeopathy kit of remedies as a first line of defense, for use at the onset of symptoms and beyond (if not treated and “cured” right away).  Our family has had personal success with homeopathy and our health, and also with assisting others in our community.  With each problem needing a remedy, homeopathy will either help a lot (possibly “cure” the problem), help a little, or not help at all.  I’m not an expert, but from everything I’ve read and been told, trying a homeopathic remedy won’t hurt you, even if you’re taking heavy prescription drugs or simply taking a homeopathic remedy to try to help you while you wait to see a medical doctor.  The homeopathic medicines come from nature and are highly diluted and mixed with either a sugar or milk base (in tablet or pellet form).  The odd thing to me is that the more diluted the remedy is, the stronger the remedy is (that doesn’t seem logical, but it’s true).  I’ll have more on homeopathy on my website soon (if it’s not on the “Life with an SCI” page where this will be, e-mail me a reminder please:).

That was an aside on homeopathy, now back to respiratory care (incidentally, occasionally my secretions indicate a possible respiratory infection, and although there are others, a particular homeopathic remedy that helps me is Phosphorus, which should also be in almost every starter kit:)…

About the only respiratory aspect I haven't discussed above is trach changing.  I get enough respiratory supplies to last two months.  This includes a new trach, 10 new disposable inner canulas, and 10 new trach tube holders (the other supplies are related to the ventilators, and other equipment already mentioned).  I mentioned above that 5 new inner canulas are opened and reused (after cleaning, of course) every month.  We change the trach tube holder once a week (with a new one).  We keep a couple "old" (but in good condition) trach tube holders available in case we get the one I'm wearing wet when washing my hair.  As I think I mention on the "Details of My Care" page (on the above referenced "Life with an SCI" page) because I use a cuffless style trach, changing my trach is easy enough to do at home.  When I get a new trach (every two months) we change my trach, but we don't throw away the trach it replaces.  After the same cleaning process that we use for my other respiratory equipment (described below)  we then put the clean & dry trach in a zip lock bag.

Cleaning Process for Respiratory Equipment [Updated 9/17/2008]

Our cleaning process for respiratory equipment is basically this: hot water & brush scrubbing (if needed) to remove secretions; then soaking in a bin of soapy water for a little while; then rinse thoroughly; then soak in a vinegar & water solution for a little while, rinse thoroughly, shake off excess water and allow to air dry in "safe" / clean area (definitely not near a toilet).  Trachs, canulas, and couplings dry on a clean paper towel.  The in-exsufflator extensions and hoses have to have the water "slung" out (raise the tubes above your head and bring them down real fast like you're going to throw them on the ground--but don't release them:).  Keep slinging the water out until there are only very small beads inside the tubes.  If "slung" out well, they should finish drying fairly quickly, but we devised a clothespin "hangar" to which we attach the tubes for them to finish drying.  Incidentally, even though it is just water, you may want to sling out the tubing outside -- but since they are respiratory equipment and need to stay clean, and door handles aren't exactly clean, I ask my nurses to take a paper towel or perhaps a baby wipe for the door handles.  It might not be necessary, but people handle the tubing immediately before changing my inner canula out, which goes directly inside my airway. 

To finish my overview on my respiratory care...

I have a couple extra trachs, old clean trachs saved for potential emergency.  If my trach got "blocked" with a large, sticky or hard secretion, and changing the inner canula and/or using saline, ambu-bagging, and in-exsufflating didn't solve the problem, then it's time to quickly change the trach.  I keep one above my bed, and one in a saddlebag on my wheelchair, along with moist towelettes (to clean hands) and water-soluble lubricant (and all things required for trach changing) all together in a bag, which we call a trach kit.  I also have cath kits assembled similarly.  Anyway, we use a Sharpie marker to put the number of the month on the trach.  If my secretions are particularly odiferous (which happens from time to time) then we may change the trach and replace it with the newest "old" trach, as often as once a week.  Also, my ENT doctor said it's ok to use bactroban (an antibiotic ointment) to lubricate the trach before inserting it in me.  We alternate bactroban and a water-soluble lubricant every other week with my trach changesThe bactroban helps eliminate foul smelling secretions.  When my secretions become discolored (beyond the ordinary discoloration that is associated with old secretions which have remained in my chest for several hours, like while sleeping) that’s when we use Phosphorus to literally "clear up" my secretions -- they usually become white/clear again after several doses of Phosphorus, and getting the old secretions out (e-mail me if my guide to “homeopathy & the Internet” isn’t on my website).

Ok, that's respiratory, pretty much everything.

BLADDER / URINARY CARE:

I was discharged from Shepherd with instructions to use a straight catheter intermittently every 4 hours.  This works ok, if you don't consume a lot of fluids.  My daily fluid intake is about a gallon -- seriously.  Even though I now eat a normal diet, we kept my gastric tube so that my caregiver or nurse can give me water & meds while I'm sleeping.  I get about 1,000 cc of water (a liter) while in bed, and a full glass of water with meds 3 times while I'm in the chair.  Add in what I drink with meals, and I also sip water all day long from a Camelbak drinking system (available at stores with outdoor equipment, and bicycle shops, etc) and it's pretty easy to stay well hydrated and consume about a gallon of healthy liquids every day (water, orange juice, apple juice, milk, Gatorade, etc -- not soda, tea or coffee, one of my nurses said extra water needs to be consumed for every caffeine drink that is consumed).

With such intake, the output has to essentially match.  Therefore I remain cathed virtually at all times (although I can go for several hours without voiding my bladder).  We remove the catheter before transferring and bathing, but otherwise the catheter remains in me almost all the time.  This is not an indwelling Foley (there's no balloon on the end of my catheters).  When I'm in bed, I don't move around a whole lot (aside from being turned) so we just occasionally check the cath to see if it's still in far enough to be effective (caregivers please clean your hands before & after adjusting:).  When I'm in my chair, we use a bungee cord to hold the catheter's bag in place (one end of the bungee hooks to the bag, the other end hooks to my chair).  This works well.  Occasionally the catheter will slip out a little too far to work, but we adjust it and I'm back in business (please clean hands before checking and after adjusting:).  Otherwise, we just drain the cath bag periodically throughout the day and I can drink all I want!

By taking the catheter out for transfers and bathing (and cleaning it -- no, not with my respiratory equipment as mentioned above, cath stuff has it's own process, basically: rinse catheter thoroughly with hot water, and "store/soak" it in its own basin of vinegar & water until needing it again, rinse well after taking it out of the solution, before using it again; the catheter bag gets a mild bleach solution squirted inside of it, and it's rinsed thoroughly inside and out, and hung up to dry before using it again -- although it can be wet, it doesn't have to finish drying before using it again) anyway, by removing the catheter several times a day, and using a baby wipe to clean my privates before cathing and after removing the catheter, we're able to break the bacteria "path" that often results in frequent UTIs for people with indwelling Foley catheters.  Incidentally, we usually use a catheter for one week before throwing it away and opening a new one.  My cath bags are usually replaced once a month.

That's my bladder & urinary system care.  Incidentally, good hydration is very important for quads.  Kidney failure is the number one cause of death in quadriplegics (so I'm told).  But also, UTIs and kidney stones are common in quads also.  Having lots of fluids to flush the kidneys and urinary system probably helps prevent UTIs and the formation of stones.  I can't say that for sure, but I can say I very rarely have a UTI (it's been well over 3 years since I've needed an antibiotic for anything -- thank you God:) and although we haven't had my kidneys & bladder checked for stones, I haven't experienced any mysterious dysreflexia or had blood in my urine, which could indicate a problem with stones.  I'm told that when there are stones, either dysreflexia will persist with no obvious reasons (a full bladder is the number one cause of dysreflexia; dysreflexia is simply a rise in blood pressure which results in a possibly reddened face and perhaps a headache, red "splotches" on the upper chest, and/or neck and face -- dysreflexia is an autonomic response that quadriplegics experience when the body has a pain, it's an alert system since we often can't feel that something hurts, like able-bodied people can -- and yes, dysreflexia can be a serious problem).

GENERAL QUAD CARE:

Respiratory and bladder/urinary care I addressed above.  Those are extremely important because those systems are where it seems most infections occur.  But other aspects of quad care are important, too.  Bowel maintenance.  I sleep through the bowel program.  My nurse or caregiver does a bowel program (BP) every other day.  The nights preceding a BP, I eat "yogurt & sticks" -- sticks are Fiber One cereal, All Bran cereal or Bran Buds -- the combination is not bad and can be jazzed up with fruit like strawberries or blueberries:).  Yogurt is wonderful for regulating the GI (gastrointestinal) system, and "sticks" provide extra fiber to really clean me out and ensure a successful BP.  On nights not preceding a BP, I'll have a yogurt drink or eat a yogurt.  The yogurt provides "good bacteria" (most yogurt has “live active cultures” which can help reduce or prevent symptoms associated with upset stomachs; and I’ve heard yogurt helps prevent yeast infections, and I’ve never had one of those, although that has more to do with me being male than me eating yogurt:) and yogurt is somewhat of a lubricant which helps ensure an easy BP after another day of eating (since I eat two days of food before my body is emptied, I put yogurt in between the two days:).

I basically eat one large meal a day, and some snacks.  I always have a banana or some fruit (a peach, plum, pear, nectarine, orange, grapefruit, grapes, strawberries, an apple, just some kind of fruit) when I get up (I get up about 3 p.m. and stay in my chair throughout the day and I generally work on my computer all night until I'm put back in bed about 6 a.m. -- doing frequent weightshifts allows my body to tolerate 15 hours in the chair).  Anyway, a banana (a banana is my usual, but an apple with crunchy peanut butter is a definite favorite:) after I get up, then usually a snack with my 5 o'clock meds.  At this time, I also drink orange juice mixed with two tablespoons of "Buried Treasure" (a colloidal vitamin & mineral solution; the citrus flavor mixed in OJ is not bad at all).  Some of the colloidal solution has fat-soluble vitamins and/or minerals, which is a good excuse to eat something fattening for my snack with the colloidals in OJ!  (The aforementioned apple with peanut butter provides PLENTY of fat:)…

Eating basically one meal a day, plus snacks and dessert, allows me to maintain my body weight through portion control.  By not eating 3 meals every day, I don't take in too many calories, and I don't gain weight (it's actually easy to lose weight, if necessary, by reducing the sweets and overly fattening foods, and I don't burn many calories through exercise;).  This also allows my body to not get ridiculously full and makes tolerance of only having a bowel program every other day, ok.  We used to do a BP every day.  For me, and many quads, it's not necessary.  Some quads do a BP three days a week.  It largely depends on your intake and what works for your body.  Also, for convenience, sometimes we'll "double up" on the BP.  This means having it on back-to-back days, so that on a particular day that I might need to be in my chair when we would normally be doing a BP, then we don't have to concern ourselves with the BP that day.  Doubling up is also good if I happen to eat a TON (Thanksgiving, anyone?:).

Other quad care aspects... daily bath in bed.  I sleep through all but the washing of my face and hair.  We use a "shampoo basin" to wash my hair in bed (available at: www.allegromedical.com).  When my hair is cut pretty short it can be effectively washed with washcloths when I'm in my chair.  While bathing, my caregiver or nurse also checks my skin for red areas or open areas (usually, there are none, thanks to weightshifts in the chair, and appropriate padding of bony areas such as elbows both when in the chair and in bed).  We do range of motion on both my arms and legs while in bed.  Since most of my care is done in bed, that's when we choose to have our nursing care (we're allowed 40 hours a week, largely because I'm vent dependent) which we split into 5 eight hour shifts).  This is partly why I go to bed at 6 a.m. and I'm put back in my chair at about 3 p.m. (nurse usually works 7 a.m. to 3 p.m.).  Family & friends caregive for me at all other times, but there's much less to do when I'm in my chair.  Occasionally I need the catheter adjusted while I'm in my chair, or to be in-exsufflated, but that's essentially it for caregiving issues for the approximate 15 hours a day I'm in my chair.  I get meds and need to eat, but I'm relatively low maintenance when I'm in my chair.  

Other physical therapy... aside from the aforementioned passive range of motion in bed daily, I also try to get on my tilt table for about an hour session every week (more frequently would be better; daily would be best, but my schedule won't won't currently allow it).  Standing up and bearing weight is good for the total body, from bone health & strength to organ function. Humans are designed to be vertical at least part of the time (I was once lectured on the benefits of using a tilt table, and the gist is it helps everything!:).  My legs spasm quite a bit, especially when I'm first put on the tilt table.  I think the tilt table spasming is largely due to straightening my hips more than they usually are, even when I'm on my back (i.e. supine) in bed.  My legs also spasm when being ranged -- they aren't exactly passive and usually fight my caregivers pretty well, which has helped them maintain surprisingly good muscle tone.  They don't spasm much when I'm my chair, only occasionally.  My whole body/torso spasms occasionally when I'm in my chair, as if my body wants to straighten out.  That's how I broke the back off of my wheelchair several years ago.  My arms inexplicably do not spasm.  

AN ASIDE ON PARALYSIS "CURES"

I fully anticipate some type of therapy or combination of therapies that scientists are trying to develop (what people think of as "cures" I think of as therapies that will restore some function -- a full "cure" is the dream, but early "cures" are focused on restoring spinal cord connectivity to enable function, the extent of functional recovery will vary -- I figure the longer one waits, the better the developed therapies will be -- but some are available via clinical trials and otherwise right now) anyway at some point, I anticipate regaining movement in my extremities (hopefully total body) but some pretty intense physical therapy will be required to get things truly usable and functional again.  I don't mind hard work -- with the Good Lord's blessing, scientists are and will continue to develop therapies to restore function with the ultimate goal being the elimination of paralysis!  If you want to know more about what's going on with regard to "cures" for spinal cord injury, click HERE.

* * * * *

That's an overview of just about every aspect of my care, and things we do and I do to stay healthy.  That's enough quad care details for now... (more e-mail below Beth:)...

>  Do you know anyone who uses an MI-E who functions as a quad, but is
>  not a quad? (i.e. Trach capped all day and Trach with BiPAP at night)
>  It seems this would cut down on assistants for suctioning? Can a
>  person not on a ventilator use it 24/7 if access to Trach via dome
>  possible?

.......Ok, I don't have direct knowledge of people (non-quads) using a CoughAssist by themselves as you mention above, but yes, that's very much possible.  Even without a trach, if someone has continuing difficulty expelling secretions, a CoughAssist can benefit them greatly.  I know the CoughAssist has a mask attachment (for people without trachs) and has an automatic setting, which can enable a relatively able-bodied person to administer this to himself or herself, and help that person cough up secretions.  Still more below!

>  I am also willing to accept any comments you have that will help my
>  quad friends.  See, I have some desiring more independence from
>  skilled nursing care.  I feel a duty to provide the best PT/OT or
>  other therapies possible for strength and endurance PLUS all
>  reasonable medical equipment to accomplish independence.  I get
>  scathing letters from nursing agencies saying my recommendations for
>  independence, which causes a reduction in nursing hours (and thereby
>  reducing their bottom line) are wrong. Bless me, I have to defend
>  every letter and every recommendation in order to be a valuable
>  advocate. This is why I depend on your opinions. Simply put, you
>  have more access to GOOD information than I do. It is a balancing
>  act and sometimes a struggle, but I work with good people and we
>  strive to do good work.

.......Well, thank you for thinking highly of my opinions.  Things I expressed above are largely from my own experiences and some research, finding routines and systems that work well for me, and it's stuff I share with others.  I share the info as possible suggestions of how to do things, but some quads require different things and do things differently.  I'm just sharing what works for me, and offering my relative good health (lack of antibiotics and a fortunate avoidance of hospitalizations:) as evidence of what we're doing being beneficial for me as a ventilator-dependent quadriplegic!
 
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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