- Details of My Care -

 

I haven't meant to neglect this page of my website, it's just that I try to prioritize my projects on a time-sensitive basis (which since the Fall of 2004 has included going back to school, essentially year-round) and haven't had much opportunity to get to this page.  However, people find my website and e-mail me with questions relatively frequently, which I always answer (it may take me a few days to reply, but I generally reply to all personal e-mails, but if something is important -- obviously caregiving issues are important -- please e-mail me again if I haven't replied in more than a week, because your message may have accidentally been overlooked or gotten buried:). 

Anyway, in order to share information without making a huge project of this page, I decided I would simply post some of the e-mail "conversations" I have with people (with their permission:) about caregiving topics that cover some aspects and details of my care, which I believe others may find beneficial.

I incorporated what the sender wrote into my replies below, so this gives the whole "conversation."

Enjoy, and I hope some of this is useful...

  

  

Subj: Re: husband on a vent
Date: 8/12/05
To: OGKM



In a message dated 8/11/05 6:15:58 PM Eastern Daylight Time, OGKM writes:

>  Hi Bill,
>   My name is Meighan and my husband Tim is on a ventilator. Last
>  August he was diagnosed with ALS and 8 months later he had
>  complete respiratory failure and now has a trach and a vent. He
>  is pretty much paralyzed, but able to move his right arm a
>  little. Fortunately, he can talk around the trach with the cuff
>  deflated and is able to eat and drink whatever he wants. I
>  chanced upon your web site by accident...what an inspiration you
>  are!!!!!!! Thank you so much for putting together the web site.
>  We look forward to watching it grow and utilizing the resources
>  you mention.

.......Hello Meighan, thank you for the kind words!  I'll get to your questions below, but does Tim use a speaking valve with his vent circuit?  For about $80, you can virtually eliminate the mandatory pause in speech (due to the ventilator cycle).  Checkout my website again and here me speak on the "life with an SCI" page (it also has speaking valve info:).  The speaking valve is a tremendous quality-of-life upgrade... the blessing of "normal" speech!  More below!

>  I was wondering where you got the tilt table and exactly how that
>  works. And, for clarification, do you use your voice to control
>  your computer or your eyes.  And...just a few more questions if
>  you don't mind...how do you control your wheelchair? Your vent
>  tubing appears to go down the front of your chest and Tim's goes
>  off to the side and tends to pull. Do you know what the
>  difference is? You will be our first contact with someone on a
>  vent with a trach and we look forward to corresponding with you.

.......My best friend was doing an internship at a physical therapy office locally, and their equipment provider had a used tilt table that they sold to us.  Basically it's just a padded table with a large base and motorized tilt ability.  We transfer to it, strap me down (see the picture in my photo gallery, but if you need to see more details, I have another good picture I can send:) and then we tilt me up, slowly, giving my blood pressure a chance to adjust as I work my way toward being as upright as the tilt table allows (I think it's about 80-85 degrees worth of tilt angle, 90 degrees would be perfectly vertical). 

I control my computer by voice.  I use an old voice software called DragonDictate Classic edition.  It works so well for me, that I've resisted the temptation to switch to the new, latest/greatest program, Dragon NaturallySpeaking Professional version 8.  But since Classic was discontinued essentially in 1997, I'm about ready to switch.  The professional version allows special commands to be written.  They are called macros, and I write tons of them in Classic, which has allowed me to adapt it to new programs.  But a computer can be successfully operated with an infrared mouse (not sure how eyes alone can control it).  There's a thing called Headmouse, which shoots an infrared beam toward the computer user, who wears a reflective dot which shoots the beam to the computer screen.  A friend of mine puts it on his nose, and very successfully controls his computer, and even types pretty well just by small movements of his head, controlling the mouse.  There are other alternative ways to compute, but I'm familiar with the two I described.

I control my wheelchair by sip 'n' puff (checkout the bowling videos on websites linked to my homepage).  There are lots of ways for a quad to control a chair (head control, chin control, sip 'n' puff, and joystick if they have enough arm control).  I like my sip 'n' puff.  Look at the picture on my "life with an SCI" page.  The black arm with the white extension is my sip 'n' puff, and the blue tube on top is a Camelbak drinking system.  The sip 'n' puff gives us a place to mount the Camelbak, which allows me to drink whenever I want.

Vent circuit... why does his go off to the side?  It can, we'll put mine off to the side and above my head when I'm on my back, lying in bed.  But in my chair, as the above referenced picture shows, it comes straight down.  I don't like it to pull.  Remember, there's plastic inside his neck, pulling isn't good.  It can widen the stoma, which can cause air leaks.  It's not really a problem, but it is annoying!  Speaking of leaks, does he keep his cuff deflated all the time?  In the beginning, I couldn't tolerate it very well.  But I quickly adjusted once I got home, because I needed to talk.  Once it went down fulltime, we eventually went to a cuffless style trach -- which I highly recommend if he can tolerate the cuff down 24/7.  Think about a raft that you would use in a pool.  Even deflated, there's still a lot of plastic there.  I used to have scar tissue adhere itself to the plastic cuff, making trach changes a painful, bloody mess.  Without the cuff, trach changes are now so easy we do them here at home -- pain-free!  Getting rid of my cuff also decreased the amount of secretions I develop.

I think that answers most of your questions, and maybe then some!  More below!

>  Thanks again for your positive outlook. You are an incredible
>  young man.

.......Thank you Meighan!  Please share this with Tim and let me know if he has any questions -- it's his life to control, primarily, and he needs to know these things!  By the way, how long have y'all been married and how young/old are y'all?  My understanding of ALS is limited, but my impression is that it doesn't strike until late thirties at the earliest, and you spell Meighan like a young person might (older people generally have conventional spelling) anyway, just curious!  :-)

Take care and God bless!!!

\\\\\\
-o o
(  > )
   ~
- Bill - 

Visit my website on the Inter.net at: http://www.lookmomnohands.net

"Look Mom, No Hands!" <lookmomnohands.net> 

It's an expression often used by a young boy to unintentionally increase his mother's heart rate by demonstrating a newfound ability to ride a bicycle without clutching the handlebars. Here, however, it's the chosen slogan for a quadriplegic to demonstrate some of what can be accomplished SANS HANDS...

 

 

Subj: Re: husband on a vent
Date: 8/23/05
To: OGKM



In a message dated 8/22/05 9:54:22 PM Eastern Daylight Time, OGKM writes:

>  Hi BIll,
>   
>  Thanks for getting back to me. To answer some of your questions: Tim
>  is 47 and I am 42 and we have 4 children, 16, 12, 10 and 9. We have
>  been married for 17 years.

.......Thanks for sharing.  Nice to have an idea who I'm talking to.  More below!

>  You are a wealth of information. As I told you before, we don't know
>  anyone else on a vent. Will you explain how you are weaned off the
>  vent? And when you are off the vent do you get tired and have to
>  think about breathing? Also, you mentioned a device that helps you
>  cough. So, do you ever have to be suctioned?

.......Being weaned off the vent "sounds" like a great thing.  Generally speaking, I would say it is -- I have friends who were once on vents and are very thankful to be off.  But I've honestly found that being on the vent has advantages, too.  About weaning, I know your husband has ALS, but with spinal cord injuries, many quads are on vents initially, but if they have a C-3 level injury or lower, in theory, they can still access their diaphragm and have spontaneous breathing, and thus be weaned.  I'm a C1-2, so technically, I'm not supposed to have spontaneous breathing.  I can breathe for a good 4.5 hours on my own, but it's conscious breathing, done by essentially using my neck to pull my shoulders & chest up to take in air.  If I were to fall asleep, I don't think I would continue breathing since it's not spontaneous (if I did continue breathing, it would be spontaneous, but I don't know how to do a real "test" without attempting to sleep, and obviously that would require medical supervision for such a test).  But I'm pretty sure my breathing isn't spontaneous, and I'm not at a disadvantage, by being on the vent.  I talk very well, checkout the unedited voice clip on my "life with an SCI" page of my website.  Anyway...

Another good thing about the vent, is my voice is noticeably stronger than the voices of some of my friends who have weaned.  It takes effort for them to bring in enough air to be able to "get loud" but for me, with a speaking valve, I can talk significantly louder, which makes it easier to communicate in many situations.  Plus, I can talk ALL DAY LONG pretty much, without getting tired, because the vent is doing the hard part.  I'm pretty sure that some of my friends would get tired if they were to literally talk all day long, morso than I would anyway, thanks to the vent.  With ALS, I won't pretend to know how much energy or physical ability your husband has, but my limited understanding is that it's a degenerative condition in which he'll continue to lose physical ability.  The vent might help him conserve energy in the long run.

Another advantage to having a vent/trach is the CoughAssist machine.  Yes, we will develop more secretions because we have the trach (a foreign object in your throat isn't normal:) but the CoughAssist (also called an in-exsufflator) allows secretions to be removed quickly & easily -- WITHOUT SUCTIONING!  I haven't been suctioned in over 7 years.  I'm in-exsufflated as needed, somewhere around 5 times a day, but could easily be more.  Checkout my testimonial/endorsement on my "life with an SCI" page on my website.  The key here, is that although I develop more secretions than friends who have weaned (and don't have a trach anymore) it's very easy to remove the secretions, before they become serious respiratory problems (bronchitis, pneumonia, etc).  One such friend who weaned, was in and out of the hospital for a solid two months with nagging bronchitis.  Whereas I haven't developed any serious respiratory problems like that, thanks to God, but also thanks to removing secretions with the CoughAssist.  More below!

>  Once Tim gets the software for our computer he will enjoy
>  communicating with you.

.......There are some decent choices for voice software.  If he's REALLY into computers, NaturallySpeaking Professional version 8 is the program I'm about to start using.  But the preferred version will suffice for "casual" use, and it's not as expensive.  If the cost isn't a problem for y'all (professional is I think at least $600) then I would get that, even if he won't immediately want to use the advanced features (mostly it's the ability to create custom voice commands, to simplify and shorten various processes, i.e. can do multiple commands with one voice command).  I see you've sent another message, I'll check that out now...

\\\\\\
-o o
(  > )
   ~
- Bill - 

Visit my website on the Inter.net at: http://www.lookmomnohands.net

"Look Mom, No Hands!" <lookmomnohands.net> 

It's an expression often used by a young boy to unintentionally increase his mother's heart rate by demonstrating a newfound ability to ride a bicycle without clutching the handlebars. Here, however, it's the chosen slogan for a quadriplegic to demonstrate some of what can be accomplished SANS HANDS...


 

Subj: Re: husband on a vent
Date: 8/23/05
To: OGKM



In a message dated 8/22/05 9:58:40 PM Eastern Daylight Time, OGKM writes:

>  Hi BIll,
>   
>  I forgot to ask you...with the cuffless trach is it the same size as
>  the cuffed trach? Tim keeps his cuff down all day, but we keep it
>  closed at night when he sleeps. He has the disposable inner canula,
>  which we change every day. How often do you change your trach? Tim
>  has not had his changed for three months.

.......You can get the same size trach, yes.  I had a Shiley size 8 with a cuff, and now I use the Shiley size 8 DCFS, which is cuffless, and uses snap-lock disposable canulas.  That's my preference.  We buy a box of 10 disposable canulas every two months, and a new trach every two months also.  I use 5 new disposable canulas each month, we have a washing process for my respiratory equipment (canulas, nebulizer stuff, and in-exsufflator extension hoses, which come from extra lengths of tubing with my vent circuits).  You don't have to change the trach as frequently as I do.  I get a new one every two months, which alternates with the old one.  We date them underneath the outer portion (where the trach band fastens).  We actually change the trach about once a week.  Without the cuff, changes became super easy, especially since I can breathe some on my own.  With the cuff, I had scar tissue adhere itself to the cuff, and my pulmonologist used to -- literally -- rip it out my neck.  Not fun, a big bloody mess -- I hope it's not that bad for Tim.  Without the cuff, actually my primary caregiver, who I trained, she changes my trach -- and she actually has no medical training, just what I've taught her.  Actually, all Tim's primary caregivers need to at least know/see how to change his trach, just in case it were to accidentally come unfastened and fall out.  That shouldn't happen, it hasn't to me in 8 years, but it's something a caregiver should at least see done, in case an emergency situation arises.

Now, I've never really had an emergency situation, thank you Lord, but an example would be having a large, dry, sticky secretion that won't come out with suctioning or in-exsufflating, and it's actually blocking the end of trach, so he's not getting air.  The high pressure alarm would be sounding, because the vent would be meeting resistance as it tried to push in air.  Anyway, usually in-exsufflating and using saline will get those sticky rascals out, or changing the inner canula will do it.  If it doesn't, then a quick trach change is necessary.  That's why we keep a clean trach in a ziplock bag, one on my wheelchair, and one above my bed.  But I also keep clean inner canulas also.  We actually change the inner canula several times a day, after in-exsufflating.  Unless we think the secretions came through "clean" then we'll change the inner canula.  That's why I keep 5 in a rotation for a month.  Eventually, the snap locks start to lose their grip, and since they are technically disposable, a month is the usage length I've found appropriate.

I forgot to mention that the reason we usually change the trach about once a week, is because the speaking valve can dry out secretions (the valve negates the effect of the HME -- heat & moisture exchange -- on the vent circuit, which is why the valve shouldn't be worn when sleeping -- give your lungs a chance to re-humidify:).  Anyway, this can also be "combatted" with bronchosaline.  Adding what is essentially medical-grade salt-water is a quick way to loosen sticky secretions.  But, occasionally, some get very dry and stuck to my actual trach, which, if they dry near the end of the trach, can start to "inhibit" air flow.  Then we change it.  Also, sometimes the secretions and/or changed canulas have a particularly odiferous scent, and changing the trach, which we lubricate with bactroban, a prescription antibacterial ointment, which usually solves the odiferous problem.  The generic for bactroban is mupirocin ointment, my ENT doctor used that to lubricate my trach after performing a bronchoscopy, which is how I know it's safe to use as a lubricant, although some use a sterile, water soluble jelly.
 
>  Hope you don't mind all the questions!

.......Not at all!  I need to put this information on my website.  Do you mind if I use my replies to your e-mails and put them on my website?  I can remove your e-mail address, but someone with ALS might read it and want to contact you.  Anyway, no last names would be used, since I don't know yours!  :-)

\\\\\\
-o o
(  > )
   ~
- Bill - 

Visit my website on the Inter.net at: http://www.lookmomnohands.net

"Look Mom, No Hands!" <lookmomnohands.net> 

It's an expression often used by a young boy to unintentionally increase his mother's heart rate by demonstrating a newfound ability to ride a bicycle without clutching the handlebars. Here, however, it's the chosen slogan for a quadriplegic to demonstrate some of what can be accomplished SANS HANDS...


 

Subj: Re: husband on a vent
Date: 8/28/05
To: OGKM



In a message dated 8/27/05 11:44:55 PM Eastern Daylight Time, OGKM writes:

>  Thank you for all the information. Of course you can use my
>  questions on your web site. I should be paying you for all the
>  information. Just for clarification, you re-use the inner canulas
>  that are intended for one time use?? It does seeem so wasteful to
>  just toss them in the trash, so I am going to start being more
>  resourceful. Would it be okay to store them in a zip-lock bag or
>  does it need to be something sterile? And you actually re-use the
>  trach? I wonder if Tim could since his has the cuff on it. For Tim
>  to talk we just deflate the cuff and increase the title volume, so
>  he doesn't have the valve. I mentioned the cuff-lesss trach to him,
>  but he likes to close it at night to sleep. I am anxious for him to
>  get the software for the computer so he can talk to you
>  himself...you really are an inspiration. If you don't mind a
>  personal question...do you have feeling and sensation in your limbs,
>  hands, feet, etc.? Tim has full sensation, he just can't move.

.......Yes, the disposable inner canulas that are very clearly marked "do not clean or reuse" we clean and reuse (generally 5 are used a month, then replaced).  The cleaning process is basically... rinse really well with hot water; soak in bin with soapy water for a while; rinse and soak in vinegar/water solution for a while; rinse well, shake out, air dry on paper towel.  If you use them frequently (i.e. they aren't sitting out gathering dust for more than a day) then they can probably be ok uncovered.  Otherwise, a clean plastic storage container would be good.  Ziplock bags are great for rarely used things, like "old" trachs.

I don't know about reusing trachs with cuffs.  The plastic on the cuff doesn't seem overly durable (although I've never examined it closely myself:).  I understand about wanting the cuff up for sleeping... initially.  But I got used to having it down full time, which is advantageous because I can still talk, whenever I need to (as you know, cuff inflated = no speech).  Also, cuffless or not, Tim can still use a speaking valve.  It's simply an addition to the vent circuit (see the picture of me on the "life with an SCI" page -- the teal colored device at the top of my vent circuit is the speaking valve:).  It's simply a one-way valve that allows the full amount of each ventilator-given breath to be used for speech.  Without the speaking valve, which allows air to flow-in freely but closes off in the exhale direction (it's really quite amazing:) some air gets "lost" out the vent circuit's exhale valve.  That's why there is a mandatory "silent pause" in between ventilator breaths.  With the valve, that pause-time between breaths, is significantly reduced.  That's because you get to use the full amount of the breath to speak with... my volume was 800 cc cuff up, 1100 cc cuff down, when I was released from Shepherd.  I soon went to cuff down fulltime, at 1100 cc tidal volume.  Then it was reduced to 1000 cc, and now I'm on 900 cc.  That never changes, since I have a cuffless trach, and with the 900 cc and a speaking valve, I get near-continuous speech with excellent volume, even at just 13 breaths per minute.

Ooh... here's a big tip.  The medical justification for the increased tidal volume when the cuff is deflated, is to allow for the "leakage" of air that goes out the mouth & nose.  Since it was described as "leakage" to me, I felt I had no ability to stop it... not true!  I can essentially "cuff" myself by merely closing my mouth and not allowing any air to escape it or my nose.  This basically allows my lungs to receive the full volume of what is now 900 cc for me, as if I were cuffed, which is a more satisfying breath than what I remember the 800 cc giving me with the cuff up, or, at least, a comparable breath (I honestly couldn't compare unless we put a cuff trach in me... which ain't gonna happen, without someone giving me a REALLY good reason:).

Thanks your permission to post our "e-mail conversations" this is info that I really should make available.

\\\\\\
-o o
(  > )
   ~
- Bill - 

Visit my website on the Inter.net at: http://www.lookmomnohands.net

"Look Mom, No Hands!" <lookmomnohands.net> 

It's an expression often used by a young boy to unintentionally increase his mother's heart rate by demonstrating a newfound ability to ride a bicycle without clutching the handlebars. Here, however, it's the chosen slogan for a quadriplegic to demonstrate some of what can be accomplished SANS HANDS...

 



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