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Author Topic: I never thought I'd b posting anything like this...  (Read 9431 times)

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lcmgadgets

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I never thought I'd b posting anything like this...
« on: September 15, 2012, 06:47:43 am »
Heres a different sort of post: It's 6:30am here in London, ON, Canada. 2 hours ago I was performing CPR on my wife, who woke me up to say she couldn't breath--& then panicked as her airway completely closed, ran down the hall, & collapsed. She's alive, & they got to her fast, but they're performing a CT scan to find out if she suffered any brain damage from O2 lack. Her airway WAS closed--I'm not sure if I was getting air into her lungs or not, but I think I was. Now I'm in the waiting area in ICU waiting to c her. She's got a pulse, & they crammed a breathing tube down her throat & got her breathing on her own, but she's still unconscious. How I've stayed this calm is beyond me...wish us luck. I've got a 7 year old son with autism, etc., & we've had a long string of terrible luck, & now this...
« Last Edit: November 17, 2013, 09:35:28 pm by lcmgadgets »
"Godzilla is a warning. A warning to each and every one of us. When mankind falls into conflict with nature, monsters are born."
Professor Hayashida

danny_galaga

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Re: I never thot I'd b posting anything like this...
« Reply #1 on: September 15, 2012, 08:42:31 am »

Christ! Keep us posted. If I didn't know any better it sounds like some sort of anaphylactic reaction  :(


ROUGHING UP THE SUSPECT SINCE 1981

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Re: I never thot I'd b posting anything like this...
« Reply #2 on: September 15, 2012, 08:58:19 am »
The older I get, the more I worry about things like this. I really hope she is ok. Good job keeping calm. I am not sure how I would react in a situation like that. We will pray for you and your family.

J_K_M_A_N

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Re: I never thot I'd b posting anything like this...
« Reply #3 on: September 15, 2012, 03:18:05 pm »
This reminds me of the episode in MASH where Radar has to cut open a soldier's throat for him to breath.

Yeah, anaphylactic. Some kind of extreme allergy?
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Re: I never thot I'd b posting anything like this...
« Reply #4 on: September 15, 2012, 03:22:17 pm »
Stay strong, Bro.

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Re: I never thot I'd b posting anything like this...
« Reply #5 on: September 15, 2012, 04:13:40 pm »
 :-[

Hope everything is OK with you and your family.

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Re: I never thot I'd b posting anything like this...
« Reply #6 on: September 15, 2012, 05:37:36 pm »
Your calm and collected reaction undoubtedly saved her life.  Now you're her husband and her hero.  I hope that her recovery is swift and that she bears no ill effects from this ordeal.  Take heart in knowing that you acted admirably.  Best wishes through out this time.

« Last Edit: September 15, 2012, 06:22:11 pm by Le Chuck »

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I never thot I'd b posting anything like this...
« Reply #7 on: September 15, 2012, 06:21:39 pm »
Best of wishes!

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Re: I never thot I'd b posting anything like this...
« Reply #8 on: September 15, 2012, 06:38:22 pm »
Hope everything works out for the best and your wife makes a full recovery. 

Your wife will be in my prayers.

If I had only one wish, it would be for three more wishes.

lcmgadgets

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Re: I never thot I'd b posting anything like this...
« Reply #9 on: September 16, 2012, 10:04:29 pm »
Thanks to every1 who has posted such wonderful replies. I find myself surrounded by friends & family--me, my father-in-law, & her sister r pleased to c the outpouring of sympathy, support, & offers of help in this most difficult of times.

Having said all that, I have nothing but bad news to report. The lowered my wife's temperature, & kept her at about 33 degrees celcius for 24 hours. Then they removed the cooling blanket, & allowed her to warm up on her own. That started at 6:30am today, & she was back to normal body temperature by about 11am. They also slowly tapered off the paralytics & seditives, & we watched for a response. Nothing. A little reflex twitching & some very small seizures, but nothing but reflexive reactions otherwise. Her physical stats, in the meantime, had improved slightly, after a very worrisome drop during the night. About 2pm the neurologist arrived. They gave her a CT scan, & then we got the news. The scan showed swelling in her brain--extra bad in this case as CT's r not particularly sensitive to swelling--suggesting that it is massive. & there r other signs that the brain damage (note: not IF there is brain damage, but how much) is extensive. Tomorrow morning they will perform a critical test--it involves stimulating a nerve ending in an extremity electricly & seeing if there is an appropriate reaction in the brain. If there is none, the person is brain dead. If there is a response, then we will begin a battery of other tests to find out how badly her brain is damaged. We r agreed (at this point), that if the test comes back negative, we will unplug the machines & wait & watch. Her heart is beating on its own (weakly), & her lungs r working (with only a little assistance). We don't know how long it would take her body functions to stop once the machines r removed. If the test comes back positive...we have other choices to make. Which may ultimately lead to a harder decision down the road.

U know how we all know at least 1 family that seems to have tragedy after tragedy? We r that family--particularly my wife, Laura, who has a decade long string of terrible luck, culminating in this. If any1 wants to see the list, I'll post it. It'll shock most of u.

A few of u have suggested possible causes--its a complete mystery at this point. Allergic reaction is extremely unlikely, which I'll explain if any
"Godzilla is a warning. A warning to each and every one of us. When mankind falls into conflict with nature, monsters are born."
Professor Hayashida

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Re: I never thot I'd b posting anything like this...
« Reply #10 on: September 16, 2012, 10:25:19 pm »
Thanks for the update.  Go be with your family.  You're in our thoughts but are needed elsewhere.

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Re: I never thot I'd b posting anything like this...
« Reply #11 on: September 17, 2012, 10:28:53 am »



Best wishes, lcmgadgets.  Stay as strong as you need to be.

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Re: I never thot I'd b posting anything like this...
« Reply #12 on: September 17, 2012, 11:11:27 am »
Very sorry to hear about this.  Can't imagine what you and your family are going through. 

lcmgadgets

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Re: I never thot I'd b posting anything like this...
« Reply #13 on: September 18, 2012, 07:43:52 am »
Hi again every1.

Well, I have only the worst news to report. Laura is dead. Neurology performed a CT scan, then an emotive response test, which is considered conclusive, & there is no brain activity in my wife. Later today we will unplug the final machines, & organ harvesting will begin.

To the f**k with the voodoo doll of my wife, u can stop now. U win. None of u will know what I'm talking about, but I hope u will forgive me for what is probably about to become a long screaming rant. Have u ever noticed that u know at least 1 family whose share of bad luck & tragedies seems way over the average? We r that family. More specifically, Laura has been the more direct target of more evil crap than any1 else that I personally know. I'm only a splash victim. Here's the rundown:

2003? Laura's best friend in the world (she always seemed to have a hard time making & keeping friends, so they were particularly important to her) dies in a horrible drowning 'accident' (there is some unproveable suspicion that she may have been murdered).

2006 Laura slips on the ice & falls on her rear. & breaks her knee so badly that a plate & 4 screws r needed to fix it. She is left in permanent chronic pain, unable to run, unable to kneel on a floor to play with our (then 1 year old) son, walking with the aid of a forearm crutch. If she had lived, she was facing an ankle fusion surgery to prevent deteoration in 1 ankle, & possible knee replacement surgury(ies) (they didn't imediately give her an artificial knee only because she was so young (34)).

2007 Her mom dies, in 2 weeks, of lung cancer. More needs to b noted here. Laura was a multi-denominational chaplain working in the palative care clinic in the local veterans' hospital. She was no stranger to death; she had seen & helped thousands of people die, of all races, ages, & heritages, & in every way imaginable. & yet, of all the people she had seen, she could say, independently of the fact that it was her mother, to whom she was mountainously attached, that her mom's death was the worst she'd ever seen. She never recovered from this experience, & it was the clinch pin that ultimately made her unable to continue her work, put her on permanent long term disability for depression (almost never acheived in Canada), &, I believe, sped the downward spiral that finally has killed her.

2008 - 2010 We realize that something is wrong with our son. After many consultations, examinations, tests, etc. (many of them not covered by OHIP & very expensive), we get a diagnose of autism, ADHD, sensory processing disorder, & irlen syndrome.

2010 - 2011 We pull our son out of school after 2 disastrous years (mostly the fault of the school board), & ultimately get a letter from a child psychiatrist saying that he is unsuitable for school. This despite the fact that professional assessments rate his IQ as at least average. This despite the fact I can safely say that most people find him an intelligent, friendly, happy boy who too easily makes friends (he'd wander off with any1, even now, I think). NOTE: There is 1 positive spark here. My wife loved homeschooling him, & literally taught him more in 1 day than he learned in 2 years in school.

2012 Laura suffers thru 5 surgeries in 5 months, all trying to figure out why her tongue keeps swelling so badly that it threatens to cut off her airway. The doctors r certain she has lymphoma. She gets 3 new, big scars on her throat, a tracheoscopy (forgive my spelling), & more chronic pain, body wracking coughing that keeps her up most nights, chronic nauseau, fatigue, etc. We r forced to cancel our booked trip to Paris (we had insurance so we recouped all but $400).

Friday, September 14, 2012--finally, a feeble ray of hope! We get the results of the biopsy--no lymphoma! Thru steroids & surgery, Laura's throat has been cleared, the doctor is thrilled with how good it looks, & he removes the trach. Laura can talk again, breaths great, & is relieved beyond measure to b free of the trach. We begin to talk of rebooking our once-in-a-lifetime dream trip to Paris.

Saturday, September 15, 4:30am, 2012 Laura's airway mysteriously closes completely. She panicks & runs, in mindless terror down our hall, crashing into the kitchen table without even seeing it & collapsing on the floor (no, this isn't a movie script, it was real, I WAS THERE). Despite imediate help & excellent care, she slips into a coma, suffers disastrous brain damage, & never revives. 1 feeble, tiny good point: the amount of time she spent terribly frightened must have been less than 5 minutes, the amount of time she spent in abject, mindless terror about 30 seconds, --BINGO! Either that, or I was attempting to say "before" but it was too many letters to type-- she passed out.

I thot I was saving her as I started CPR. I was confident that my compressions were good, & that despite the blockage I was getting air into her. I had emergency services on speaker phone in front of me, & the ambulance arrived seconds (SECONDS) after I started working on her.

But I got to watch her face turn grey (although her colour improved as I started CPR), her eyes widen & go glassy & blank. I imagine that that image, my wife's blank, glassy, dead stare up at me, as I hovered over her, alone (gratefully for only a few seconds) in the half light of the kitchen, will keep me awake nights for the rest of my life.

As I fight to type as I cry, I note another tiny good point: My son slept thru it all. He knows now that mommy is dead, has seen her, & has taken it (for now), unimaginably well. I imagine that, in a strange way, his autism is helping him cope.

I apologize profusely for spreading this nightmare to my heroes (yes, heroes) on this forum. I hope u will forgive me. I hope u will allow me to continue to rant a few more times (yes, I'm not done, there is more I need to say, though I hope it will not b as nasty as this was). I thank u all for the outpouring of sympathy & grief I have received from u nearly total strangers. many of whom, I say again, I see as heroes of this strange hobby of ours. Goodbye for now.

Craig Munns
"Godzilla is a warning. A warning to each and every one of us. When mankind falls into conflict with nature, monsters are born."
Professor Hayashida

ChadTower

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Re: I never thot I'd b posting anything like this...
« Reply #14 on: September 18, 2012, 07:53:26 am »



Dude.  We're here for you.  If there is anything we can do just post it and someone will find a way to make it happen.


Don't assume the autism is helping your son cope.  It's probably just preventing him from expressing his despair in a way you recognize.  He's just as broken up as everybody else.  Be there for him and he'll be there for you.  It'll be of some comfort to both of you.

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Re: I never thot I'd b posting anything like this...
« Reply #15 on: September 18, 2012, 08:37:56 am »
It sounds like your wife went through a lot, and that you went through it with her. She was fortunate to spend her life with you, and your son is fortunate to have you for a father, as it is obvious you love them very much.
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Re: I never thot I'd b posting anything like this...
« Reply #16 on: September 18, 2012, 08:55:39 am »
Extremely sorry to hear about this, Craig.  To echo Chad, if there's anything we can do just post.  Anything you wish to say- I'll listen. 

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Re: I never thot I'd b posting anything like this...
« Reply #17 on: September 18, 2012, 10:32:46 am »
So very, very sorry to hear about your loss.
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Re: I never thot I'd b posting anything like this...
« Reply #18 on: September 18, 2012, 11:00:39 am »
Damn man.  Sorry for your loss.

knave

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Re: I never thot I'd b posting anything like this...
« Reply #19 on: September 18, 2012, 12:02:55 pm »
I don't really have any words...Just that my thoughts are with you.


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Re: I never thot I'd b posting anything like this...
« Reply #20 on: September 18, 2012, 04:29:05 pm »
You have friends here.
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Re: I never thot I'd b posting anything like this...
« Reply #21 on: September 18, 2012, 05:00:43 pm »
Man that is the most terrifying thing I have heard, I don't know what to say, but if getting it out on these posts helps a little then you should continue to do it, there are people here listening.

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I never thot I'd b posting anything like this...
« Reply #22 on: September 18, 2012, 06:22:24 pm »
I have few words, tears I have more of!

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Re: I never thot I'd b posting anything like this...
« Reply #23 on: September 18, 2012, 07:15:28 pm »
I echo Chad's words.  Your son is grieving.  You just need to find out how he's coping and help him along (or if he's coping at all).  As cruel as it sounds, you'll need to grieve yourself and get past it as soon as possible so you can help him and find out what he's experiencing.
I'll exercise patience when you stop exercising stupidity.
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Re: I never thot I'd b posting anything like this...
« Reply #24 on: September 18, 2012, 09:50:53 pm »
I don't know you but I do know this community has helped me in ways I can't even describe.  You will find support here if you want it.  I'm very emotional for you.
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Re: I never thot I'd b posting anything like this...
« Reply #25 on: September 21, 2012, 12:00:31 am »
Sorry to here that, fellow Ontario dweller. I'll be praying for you!  ;D
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lcmgadgets

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Re: I never thot I'd b posting anything like this...
« Reply #26 on: October 07, 2012, 11:20:38 am »
Okay, this is my 3rd attempt to post in the last hour. I don't know whats wrong, but I'm out of time to do the full post I want. I have some things to say.

I'm back. Thanks again for every1's kind words & attention. I'l try to post again later today.

Craig
"Godzilla is a warning. A warning to each and every one of us. When mankind falls into conflict with nature, monsters are born."
Professor Hayashida

lcmgadgets

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Re: I never thot I'd b posting anything like this...
« Reply #27 on: October 08, 2012, 07:46:56 pm »
First, thanks every1, 4 all your kind words & offers of help. If I can think of anything any of u could do, u can count on me to ask. My son & I have a hard road ahead of us, & I can't afford to refuse any offer of charity, if only 4 his sake. I wish I could think of something. Build me an arcade cabinet? lol

Secondly, I want to apologize 4 inflicting my heroes & friends on this site with the horrible xperience my wife had to go thru. I'll say it again, 4 her, thankfully, it was fast. What I & my son r now suffering is nothing compared to what she had to go thru.

We had the service 4 my wife 2 Saturdays back. It was...nice. I actually was able to speak, after I was sure I'd b too much of a mess. A lot of people who I barely knew, or only knew from my wife's description of them, came. Every1 was shocked &, of course, terribly upset. But they all agreed that we honoured her memory, & that the establishment of a trust fund for our special son was an excellent idea that she would have approved of.

U might c less of me here from now on. Our finances r now in ruins, &, 4 reasons I'll elaborate on if any1 wants, I've got to homeschool my boy, & still find a way to bring money into the house. My arcade project, now in its 6th year (!) is now on indefinite delay. I hope I can get back to it someday, but I can't c it being soon. I do have most of the controls & a lot of miscellaneous parts I'll need to complete it, but now I must save every penny, & my time must now b spent on my son.

Anyway, again, thanks, friends, & keep this dream alive.

Craig
"Godzilla is a warning. A warning to each and every one of us. When mankind falls into conflict with nature, monsters are born."
Professor Hayashida

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Re: I never thot I'd b posting anything like this...
« Reply #28 on: October 08, 2012, 09:00:09 pm »
Look around the net for educational alternatives that might suit you.
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Re: I never thot I'd b posting anything like this...
« Reply #29 on: October 09, 2012, 09:41:01 am »
Deeply sorry for your loss. I can't imagine the horror of going through anything like it. :(

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Re: I never thot I'd b posting anything like this...
« Reply #30 on: October 09, 2012, 09:49:35 am »
First, thanks every1, 4 all your kind words & offers of help. If I can think of anything any of u could do, u can count on me to ask. My son & I have a hard road ahead of us, & I can't afford to refuse any offer of charity, if only 4 his sake. I wish I could think of something.


It's not charity.  It's humanity.  You're one of us and we take care of our own when we can.

Is there anyone in the Ontario area that might be able to help this guy out with his cab?  Or maybe find him a working game on which we can chip in to buy? 

lcmgadgets, is your boy into anything we might be able to help with?  Does he have an area of heavy interest?

Focusing on your son is absolutely the right thing to do here and I applaud you for it.   :applaud:

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Re: I never thot I'd b posting anything like this...
« Reply #31 on: October 09, 2012, 11:45:57 am »
What have you got in terms of conntrols/pc/display already?  Maybe we could get together a bartop knockdown/flatpack or a standalone cp .   So you and your son could get your game on without taking away from family time.  Let me know what you've got and what type games you play.  I'll volunteer the wood/paint/ shipping if you want them.  I've even got a few buttons and sticks I'll probably never use...

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Re: I never thot I'd b posting anything like this...
« Reply #32 on: October 09, 2012, 11:47:34 am »
Again, I am so sorry for your loss.

Look around the net for educational alternatives that might suit you.

Or, better yet, PM me and we can talk about Autism and schooling/services available in Ontario (I have a 12-year old and a 10-year old with Autism). While I am in Toronto and don't know much of local services in London, Mrs. Cheffo has established a pretty decent network from here to Hamilton and somebody might know somebody or something that can help you out in London. Definitely check out (if you haven't already) Community Living London, and Autism Ontario London.

There are a number of different funding programs available, most of which are need-based, although some are independant of needs (these I am more familiar with). You may want to apply ASAP for Special Services At Home funding -- it would allow you to bring someone in to the home to work with your son and provide you some respite (which is the intention of that particular piece of funding).

Also, check out Compass Autism Learning Centre -- they are local to you and have a new respite program with recreational activities staffed by therapists.

One last piece of advice -- if you have an opportunity to be part of a research study, DO IT! 99% of the time, the study itself won't give you anything actionable, but the networking that results from it can be very helpful (so, if you get invited to a meeting to hear about the results of the study, GO!).

PLEASE PM me. I know how hard it can be to manage with both parents -- I can't possibly imagine what you are going through and any help that I can provide is yours.

It's not charity.  It's humanity.  You're one of us and we take care of our own when we can.

Is there anyone in the Ontario area that might be able to help this guy out with his cab?  Or maybe find him a working game on which we can chip in to buy? 

I'll put some irons in this particular fire -- London is pretty much the coinop capital of SW Ontario and we should be able to come up with something. At the very least, I've got the assorted bits and bobs that most hoarders collectors have (including spare game boards ... think I have a 48-in-1 lying around ... and JAMMA harnesses), but no actual usable cabinet right now. I'll need to take a look at my monitor situation to see what I have there.

Any other BYOACers in London or here in Toronto that can lend a hand ? Drop me a PM.

EDIT: I had a quick look in the stash and pulled out a balltop stick, buttons, JAMMA harness and a 48-in-1 "B" board looking to go to this good home. I probably have a power supply as well, but need to test the ones I have. Probably also have some T-molding lying around as well. Who can fill in the missing pieces ? (As Chad points out, we can chip in and pay for stuff)
« Last Edit: October 09, 2012, 12:56:17 pm by CheffoJeffo »
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Re: I never thot I'd b posting anything like this...
« Reply #33 on: October 09, 2012, 01:34:18 pm »

I'm willing to help chip in with either parts or some capital. 

Cheffo's advice is wonderful.  There is nothing quite like the voice of experience here.

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Re: I never thot I'd b posting anything like this...
« Reply #34 on: October 09, 2012, 01:45:44 pm »
I hope I'm not overstepping my bounds here, but I bet if you set up something like this: http://www.gofundme.com/, the community here would rally up some funds to get you and your son playing.
http://cheeseisalifestyle.blogspot.com

Hey...don't judge me...everyone has a blog nowadays...

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Re: I never thot I'd b posting anything like this...
« Reply #35 on: October 09, 2012, 02:19:29 pm »
I'm a little late to the wall, but I'm Sorry for all that you have been through, and sorry for your loss.

As bad as it sounds, you are going to spend a lot of time messed up.

Not many people can say they have had someone they love die in front of them...When we had our 3 month old daughter die, I was pretty messed up for quite a while. I was pretty much zombified for at least the first 2 months. That was 7 years ago now, I still occasionally have issues.

Don't be afraid to accept help. (even if just an ear to listen to you) You need it whether you think you do or not.

I pass my strength on to you.

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Re: I never thot I'd b posting anything like this...
« Reply #36 on: October 09, 2012, 02:33:35 pm »
I hope I'm not overstepping my bounds here, but I bet if you set up something like this: http://www.gofundme.com/, the community here would rally up some funds to get you and your son playing.




That's a good idea.  We don't have actual goals yet, though.

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Re: I never thot I'd b posting anything like this...
« Reply #37 on: October 09, 2012, 02:41:31 pm »
Awful awful story and wish you and yours all the best,
At the least it looks like you've got a good place to vent, which can be useful.

Luck.
Rando - My build thread: http://forum.arcadecontrols.com/index.php?topic=107741.msg1142843#msg1142843 (work slowed but still progressing!

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Re: I never thot I'd b posting anything like this...
« Reply #38 on: October 09, 2012, 09:35:45 pm »
For those interested in trying to help to make Craig's days a little less ---smurfy---, please check this thread -- BYOACers Helping BYOACers.

 :cheers:
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Re: I never thot I'd b posting anything like this...
« Reply #39 on: October 10, 2012, 08:09:41 am »
Bit late here.  I just wanted to say stay strong brother. Wish you and your son the best.

We're all here for you.


 :cheers:

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Re: I never thot I'd b posting anything like this...
« Reply #40 on: October 12, 2012, 07:29:35 am »
For the OP: An article about the SSAH funding I mentioned earlier from today's Toronto Star.
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Re: I never thot I'd b posting anything like this...
« Reply #41 on: October 12, 2012, 02:46:56 pm »
For the OP: An article about the SSAH funding I mentioned earlier from today's Toronto Star.

I'm kinda in the same boat with my own daughter with CP. She's too old for some funding options, and too young for others. Her disability isn't bad enough for this kind of funding....but too much for that type. It's really an issue with their "Definition of (a particular) disability.)

It's really frustrating being in an "in between" where nobody seems to want to help. It costs a LITERAL shitton of money to care for people that have disabilities regardless of their age or condition. The government agencies have to broaden the scope a bit because not everyone fits into their "definition"

CP is the worst really, because it varies SO MUCH. The same goes for ADHD as well... It's as if they have a checklist of issues and if you don't fill all the checkboxes...You don't qualify.

Dealing with school is tops for the worst of the worst we found so far. Sure we can take your kid...Will they have an aide? no. You have to apply to have one funded. Oh but she's mobile she doesn't need an aide. Yes she does...she Can't even transfer out of her chair to go to the bathroom. we can fund you to purchase Diapers for her.  :banghead: :banghead: :banghead: :banghead: :banghead:  :blowup:

super frustrating.  :banghead:

one more for good measure  :banghead:

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Re: I never thot I'd b posting anything like this...
« Reply #42 on: October 12, 2012, 03:03:41 pm »
It's really frustrating being in an "in between" where nobody seems to want to help. It costs a LITERAL shitton of money to care for people that have disabilities regardless of their age or condition. The government agencies have to broaden the scope a bit because not everyone fits into their "definition"

CP is the worst really, because it varies SO MUCH. The same goes for ADHD as well... It's as if they have a checklist of issues and if you don't fill all the checkboxes...You don't qualify.

I feel that pain. The only funding we have gotten is a grant from Easter Seals for diapers (which we didn't need after they hit 30 months) and SSAH funding for respite services (give me money for me to get a break from my kids, but no actual money for the kids?  :dizzy:)
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Re: I never thot I'd b posting anything like this...
« Reply #43 on: October 12, 2012, 04:40:52 pm »
I'm a little late, but I just read this post today.

Wow ... This absolutely breaks my heart, man. I'll keep you in my prayers!

The fact that you came to this forum for support in your darkest hour speaks highly of the people here. They really do care about you!

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Re: I never thot I'd b posting anything like this...
« Reply #44 on: October 14, 2012, 09:46:26 am »
My God. I haven't been able to read over all the posts here for some days, & I don't have much time to post now, but, guys, I'm speechless. The outpouring of sympathy & offers of support r...beyond my ability to express gratitude for. Thank you? Thats so inadequate. Cheffo has recommended several organizations local to my area, Laura & I had been working with or at least been in touch with several of them, the 1 exception that stands out in my mind being Compass Autism Learning Center--& u can bet I'll b looking into that 1 asap.

Cheffo, we also get the funding from Easter Seals for diapers (pullups in Harrison's case). Although hes 7, we still haven't cracked the toilet training bit. We haven't pushed hard on that 1 bcause we have so many other issues to deal with. 1 thats always been a thorn in our side: Harrison doesn't eat enuf to survive (he eats, just not enuf, it almost seems to b an appetite issue--wish I had his problem lol), so we finally had to have a g-tube 'installed', & Harrison's eating is supplemented with nightly tube feeds. The formula he gets (Kids Essentials, similar to boost) is xpensive. Laura & I spent a considerable amount of time looking 4 funding 4 this, with no luck. My drug plan at work (which I don't have now anyway, since I'm pernanently laid off) wouldn't cover it, although it met much of their definition of a 'life sustaining medication'. Any1 have any idea where I might find some help/coverage with this? Its only 1 thing, but its a big 1, & in the brief time I'm going to have here this morning, its the 1st I can think of.

Theres even been talk among u about getting me/building me an arcade cab. Lol! Both I & Harrison would love it, hes a huge fan of the classics--esp the whole 'ghosts n goblins' series. I can help fund this (I have money saved, from years ago, from my Dad's estate, that he made me promise I'd throw into something...frivolous--I think this qualifies), & I have a big stack of parts & controls collecting dust in my basement. I've already brazenly told Cheffo that I would pay some1 to build me a Ghost in the Machine Mark II clone (with an LCD marquee, as per Randy T's amazing project), & I repeat it now. Its too much to ask, but, like I said, I can pay. I certainly won't have time to complete it myself now for years ahead (I won't let that stop me, though, I've already spent 6 years on it, & although my progress has been snail pace slow, it has been, surprisingly steady).

I also want to give back (or give forward). I'm going to check out the 'byoacers helping byoacers'. Sounds like a start.

And again, every1: Thanks. I hope I can help some1 else out the way you guys already have me. Gotta go for now.

Craig
"Godzilla is a warning. A warning to each and every one of us. When mankind falls into conflict with nature, monsters are born."
Professor Hayashida

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Re: I never thot I'd b posting anything like this...
« Reply #45 on: October 14, 2012, 12:10:48 pm »
Hi again. At my father-in-laws prompting, I have dropped everything to get the account # for Harrison's trust fund, as several of you have requested. Again, I thank you, my son thanks you, my father-in-law thanks you, and there are numerous other family members and friends who will thank you, if only thru me, once I tell them of the amazing generosity offered by you, my friends on this forum. First I have to point something out: At this point, I have full access to this account. I have some hurdles I have to get over before I and my lawyer can sit down to set up a true trust fund that only Harrison can access (we're thinking on his 18th birthday) but again, to make it absolutely clear, at this point, if I was a dirt bag, I could take out all the money anyone contributes for myself. So if you don't want to trust me, please wait until I have the trust fund fully locked down. Otherwise, here's the info:

Bank of Montreal
Transit # 2915
Account # 3985-436

Thanks again, from the bottom of my heart. Gotta go again, as you can imagine, there are a million things I have to do.

Craig Munns
"Godzilla is a warning. A warning to each and every one of us. When mankind falls into conflict with nature, monsters are born."
Professor Hayashida

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Re: I never thot I'd b posting anything like this...
« Reply #46 on: October 14, 2012, 12:54:55 pm »
Quote
The formula he gets (Kids Essentials, similar to boost) is xpensive. Laura & I spent a considerable amount of time looking 4 funding 4 this, with no luck

I'm in alberta so your programs might be different to ours.

We had talked to a social worker at the hospital who hooked us up with charities to fund us when we needed this as an emergency type deal. Our Daughter needed a supplement for feedings when she was born and nothing would cover it. The social worker got us in contact with the lions club/Fraternal order of the eagles who donated to help pay for my daughters supplements when we needed it. While not a permanent solution it is something that could get you by for the next few months.

also talk to social assistance/income support...just plain out ask for "child health benefits"  then with benefits for him you can apply to have your supplement covered. Your sons pediatrician can write a letter for him stating he requires this and will help push things along.

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Re: I never thot I'd b posting anything like this...
« Reply #47 on: October 15, 2012, 10:15:43 pm »
I've discovered that we might qualify for ACSD (Assistance for Children with Severe Disability), which would possibly cover the cost of Harrison's formula, + the equipment to go with it. We didn't --BINGO! Either that, or I was attempting to say "before" but it was too many letters to type-- bcause with Laura's disability, we made too much money. Now, of course...
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Re: I never thot I'd b posting anything like this...
« Reply #48 on: October 16, 2012, 09:48:36 am »
cool beans!

the government should cover it...key words are "failure to thrive". even if they say they aren't able to cover it, a letter from your pediatrician will help with them tweaking the system to work for you and get it covered.

don't forget, the government can't tell you they can do something, you have to tell them you need it, they then work around it to make it work.

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Re: I never thot I'd b posting anything like this...
« Reply #49 on: November 22, 2012, 01:54:00 am »
very sorry
 i  lost my father on August 4 in a motor vehicle accident, im 26 it he was 60 it happened 2 blocks from my new house have to drive past it every day....
Life is ....well life, that's it, stay strong, what a great community we have here so much support.

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Re: I never thot I'd b posting anything like this...
« Reply #50 on: December 03, 2012, 02:09:05 pm »
very sorry
 i  lost my father on August 4 in a motor vehicle accident, im 26 it he was 60 it happened 2 blocks from my new house have to drive past it every day....
Life is ....well life, that's it, stay strong, what a great community we have here so much support.

That was too recent, a terrible way to die, he was too young, & it so, so sucks that u have it rubbed in your face every day. My sympathy goes out to u. I imagine you've had lots of suggestions about bereavement councilling (forgive my spelling, please). I recommend u take advantage of every source of help u can find.

Both of my parents r gone--my Dad died 2 years ago in hospital (that was 1 of the few sort-of breaks we've had over the last decade--Dad's death was absolutely beautful & peaceful--even Laura said so, & as a chaplin she witnessed thousands of deaths) & my Mom of cancer 9 years ago (she lived just long enuf to attend our marriage, but she missed out on H's birth).

As for having it rubbed in your face, in my case, every time I'm in the kitchen late at night, with the light we usually leave on at night on...
"Godzilla is a warning. A warning to each and every one of us. When mankind falls into conflict with nature, monsters are born."
Professor Hayashida

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Re: I never thot I'd b posting anything like this...
« Reply #51 on: December 23, 2012, 09:11:25 pm »
Hello again, everyone. I have a bit more news. The ENT specialist that had been following Laura's case--the doctor who begged me to have an autopsy done--finally got back to me this week.

& the autopsy shows--nothing. No sign that her throat swelled shut (which, until a doctor can show me something else that can create similar symptoms, I will go to my grave swearing happened, despite the tongue reduction surgery, despite the steroids that were, until then, keeping the swelling down)(Somebody may point out that in many cases, the throat relaxes after a person dies or even just blacks out, & thus the swelling goes away. Laura had been tubulated as soon as she got to the hospital. If her throat had been swollen shut at that point, the tubulation would have left recognizable trauma in her throat. There was none). No sign of heart trouble, or lung trouble (the doctor had suspected a blood clot in a lung, but no evidence of such). No lymphoma. No HAE (hereditary engio edema?). No sign a allergic reaction (they'd already been looking for an alergy for weeks before).

So unless someone can think of something rare & bizarre, that the specialists haven't thought of yet (& they've already been looking for such for a while now) we will never know exactly what happened that terrible night.

If we never do figure it out, I hope its nothing inheritable. I'm pushing to have my son tested for HAE & anything else, however unlikely.

Happy holidays, everyone, & thanks again, from both of us.
"Godzilla is a warning. A warning to each and every one of us. When mankind falls into conflict with nature, monsters are born."
Professor Hayashida

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Re: I never thot I'd b posting anything like this...
« Reply #52 on: December 24, 2012, 04:03:53 pm »

Damn.  It sucks to have no answers.   :-\

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Re: I never thot I'd b posting anything like this...
« Reply #53 on: December 24, 2012, 06:56:40 pm »
http://my.clevelandclinic.org/Documents/Head_Neck/head_neck_testimonial.pdf

that's about the only thing i could think of that would:

a: cut off your airway

And

b: not leave any trace.

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Re: I never thot I'd b posting anything like this...
« Reply #54 on: December 24, 2012, 07:34:04 pm »

Oh Christ Craig! I hadn't looked at this thread since you first posted. My condolences and I hope you have nothing but good luck from now on.


ROUGHING UP THE SUSPECT SINCE 1981

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Re: I never thot I'd b posting anything like this...
« Reply #55 on: December 26, 2012, 09:36:13 pm »
that's about the only thing i could think of that would:

a: cut off your airway

And

b: not leave any trace.

Thanks for this. I read that article, &, given what I saw, I could believe that you've nailed it--except that she didn't have any of the other symptoms. She'd also been struggling with the swelling in her tongue for months (it was because of that, & the lesions on her throat, & the fact that the swelling seemed to react to steroids, that the doctor was sure she had lymphoma).

I will send that link on to the doctor. I imagine he'll think that it can't be that, & I worry that now theres no way to determine if this could have been it.
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Re: I never thot I'd b posting anything like this...
« Reply #56 on: December 27, 2012, 12:00:03 am »
I'm new here and just seen this thread tonight.  I can't imagine the pain you've been through and I am very sorry about your loss.

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Re: I never thot I'd b posting anything like this...
« Reply #57 on: December 30, 2012, 11:29:51 pm »
Thanks Noshbomb. It has been...awful..., there really is no way to put a pretty picture on it. But I have to add that the people here have been...beyond words amazing. I said it before & I'll repeat it now; the outpouring of sympathy, suggestions, advice, & real help, including money into my son's trust fund, & even plans to buy or build us a cab(!) have been...totally unexpected, to say the least. There r real heroes here. Thanks again, everyone, from Harrison, me, & my friends & family who u can bet I've told in detail about this forum & the people in it.
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Re: I never thot I'd b posting anything like this...
« Reply #58 on: January 02, 2013, 02:02:37 am »
I don't know. Likely moot at this point, but though it might've been environmental, it could've been psychological. Like, something seriously bad (or maybe just very impressing on her, like being shut in the fridge as a kid) happened to her years ago, and her 'condition' was an involuntary response.
« Last Edit: January 04, 2013, 10:40:58 pm by Gray_Area »
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Re: I never thot I'd b posting anything like this...
« Reply #59 on: January 10, 2013, 10:24:53 pm »
We will very likely never know. But until a doctor can explain away what I saw, I will swear that despite the tongue reduction surgery, despite the steroids that were keeping the swelling down, despite the autopsy that showed no sign of swelling or trauma to her throat that would have been caused by the ems people tubulating a closed airway, despite the fact that I was able to get air into her while I was giving her CPR (although not full breaths--I was meeting resistance), & so did the police & later ems when they arrived, despite all that, I still say it: HER THROAT SWELLED SHUT.

Laura herself said she was choking. It came out broken because she was having trouble exhaling already. Then, she went completely silent--her airway was completely blocked, & stayed that way while she panicked & ran, until she collapsed & I started CPR. If it was anything but a closed airway that had scared her so badly, she would have been screaming. I had a hard time forcing air into her (but I'll still say I got some in, although, if her airway was blocked, it could have been gastric extension). Maybe I didn't have her head fully hyperextended. Trying to hold her head in the right position & cover the stoma from her trach at the same time was a challenge.

The ENT specialist can't accept that that is what happened, but he can't explain away what I saw, or what Laura said she was experiencing.

I keep thinking of how terrifying those last few seconds must have been...to be utterly unable to breath. It turned a woman with a Masters degree, who I have always said was a genius, into a mindless lunatic. She passed out very fast...I want to make that sound like a good thing, but I can't. She suffered, I'm sure, more than I can ever imagine (or want to), but she could have suffered longer, I suppose. There--thats the best spin I can put on it. I'm glad Harrison didn't see his mommy go through that. I know I won't ever be able to stop seeing it.
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Re: I never thot I'd b posting anything like this...
« Reply #60 on: March 19, 2013, 08:36:50 pm »
Hi everyone. Its been quite a while since I've looked here, & I probably wouldn't have, except its Laura's birthday today, & I'm feeling particularly down. She would have been 42 today.

Other than the obvious, I have nothing I can justify complaining about (note the disclaimer). My son is doing surprisingly well. We've had a few mornings of waking in tears ('I miss Mommy'), but he continues to move forward. I think we've finally mastered toilet training. He's dressing himself, although snaps, buttons & zippers r still beyond him (I wish Laura could c him--there was a time when we thot the toilet & dressing would always b beyond him). His reading & math (all I'm teaching him at present) continue to improve (something which still gauls me--I'm a blue collar grade 13 grad with no letters behind my name. How come I can do what the teaching pros, with all their resources and yes, he had a 1 of 1 educational assistant, couldn't do for him in school?). We're getting a Y' membership, H' has joined the Cub Scouts, & I've gone back to something I used to love (& love even more, now): rollerskating. We're doing okay money wise for now, although when my U.I. runs out in May, we'll start drawing from our savings, & that'll last about 2 year, I figure. I can't do anything until at least September, when H'll try school again (which I anticipate will b another disaster & I'll pull him out again--I'm not letting H' know I suspect that, though), so after that I'll have to see if I can find work that I can manage along with everything else that has to b done.

...okay, I'm starting to get close to whining, so I'll stop. It is what it is. There are people out there a lot worse off than I am. I recently met 1, in fact. While trying to get Harrison together with other homeschooled kids, we've gotten to know a single mother with 4 kids, ALL special needs. She's unemployed, has been managing cancer for 4 years, & basically had to kick her husband out a few years back because he became abusive to her kids. AND she also doesn't have the support & sympathy so many here have offered Harrison & I. So I'm no longer complaining about how bad I have it.

Anyway, I hadn't intended to go on this long, & I have to get Harrison off to bed.

Happy birthday, Laura.

& thanks, again, to everyone here. She would thank u, too.
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Re: I never thot I'd b posting anything like this...
« Reply #61 on: March 19, 2013, 09:03:58 pm »
Whining?  Sounds more like a success story to me  :applaud:

You're doing great and I have every confidence that the time you've spent preparing your boy this year will pay dividends when he attempts school next year.  The road you've mapped out isn't an easy one I'm sure, but you sound like you have everything analyzed and well planned.  Keep on doing the great job your doing.  I'm confident things will look up!

Oh, and Happy Birthday to Laura!

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Re: I never thot I'd b posting anything like this...
« Reply #62 on: March 19, 2013, 09:36:30 pm »
I'm sure she's looking down at you guys with great pride.
You're doing a great job with your son. Praying for you both. 

Happy birthday Laura you have a great family.

 :cheers:

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Re: I never thot I'd b posting anything like this...
« Reply #63 on: April 15, 2013, 06:24:52 pm »
Wow. Once again, you guys amaze me with your never ending support. Thanks for helping me put things in perspective. You're right--overal, we're doing amazing well. I still sleep with the baby monitor on, & I recently went to c my doc about a barely sore throat (it's lasted about 2 months, though, so maybe I SHOULD worry)

What I was about to whine about was our financial future. No point (yet). & I have a couple of vague ideas (renting out the basement as an apartment, for 1) that may save our bacon. There's nothing that says I have to return to the absolute hell of a job I kept for 13 years (& that I'm sure would have killed me within the next 10). So I'm grateful for the good fortune that has followed such bad. You guys r part of that.

Craig
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Re: I never thot I'd b posting anything like this...
« Reply #64 on: April 17, 2013, 02:16:29 pm »
Hello Craig - I am terribly sorry to hear of what happened :(.

I started my account here today, and first read this thread a little while ago and might can leave an explanation of what happened, in particular what happened to cause Laura's throat to suddenly close. I'm really hoping that this will bring you some sort of closure, and I am really sorry if this "pokes at old wounds". I can't imagine what you went through, but all I can give right now is some sort of comfort and prayer.

It sounds strongly, that she had a condition called Laryngospasm...it is where the vocal cords basically swell, and cut off the airway to the lungs. It mostly occurs at night, when the person is laying down (asleep) and normally lasts only a few minutes. Basically, in a nutshell, people who have GERD will expierence this type of spasm when stomach acid reaches into the esophagus, and in turn, causes the airway to close. The fact that she started caughing more (randomly) and that she had a swollen tongue suggests strongly that she had GERD.

Here is a link about Laryngospasm:

http://www.m.webmd.com/heartburn-gerd/guide/laryngospasm-causes-symptoms-and-treatments


I hope that this will bring you some sense of closure, and if you will need anything in the future, please feel free to contact me anytime brother.


LC



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Re: I never thot I'd b posting anything like this...
« Reply #65 on: April 18, 2013, 02:37:50 pm »
It sounds strongly, that she had a condition called Laryngospasm...it is where the vocal cords basically swell, and cut off the airway to the lungs. It mostly occurs at night, when the person is laying down (asleep) and normally lasts only a few minutes. Basically, in a nutshell, people who have GERD will expierence this type of spasm when stomach acid reaches into the esophagus, and in turn, causes the airway to close. The fact that she started caughing more (randomly) and that she had a swollen tongue suggests strongly that she had GERD.

My God, I think u may have nailed it. Why didn't the ENT specialist mention this 1?...

Thanks for this. I'm going to email the link to the ENT specialist that worked on her, & c what he thinks. But of all the suggestions I've heard, this 1 sounds the closest to the symptoms I witnessed. & there was so suspicion that Laura had acid reflux, as well as several of the other conditions that lead to GERD. If so, it may help us determine if my son is in any danger (or even me--I've wondered if she could have been exposed to something here in the house...).
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Re: I never thot I'd b posting anything like this...
« Reply #66 on: April 18, 2013, 02:51:53 pm »
Allopathic medicine, dude. You probably can't even sue them.
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Re: I never thot I'd b posting anything like this...
« Reply #67 on: April 19, 2013, 12:19:19 am »
I'd b very reluctant to try that, anyway. Laura & I got to know the specialist pretty good, & I really do believe he gave her his all, & turned over every stone that made sense trying to help her. He was pretty messed up when she died--not even a day after he gave us the news that she didn't have cancer. I remember his reaction when he scoped her throat that day--he was thrilled with what he saw--the tongue reduction surgery combined with the steroids had taken all the swelling away, & although we still didn't know what was going on, her future was looking a lot brighter than it had been just minutes before. He was so glad to remove the damn trach that he'd never wanted to give her to begin with...

Damn it. Every time I remember how she looked on the floor as I worked on her, & what an awful experience it was for ME, I feel like s**t--& rightfully so. I cannot really imagine, nor, ultimately, do I want to imagine what it was like for HER. When she really went mindless with panic, when her airway became completely blocked, she turned away from me to run. She was so scared all she could do was run. If I could have seen her face then, if I could have really SEEN the absolute, mind shredding terror that must have become her whole existence, & survived seeing it, I can't imagine how I wouldn't now b curled into a fetal position in a straight jacket in some dark corner somewhere. My God, Laura, I am so sorry. It seemed very fast--from the moment she turned to when she collapsed after colliding with the table I don't think she even saw couldn't have been even 30 seconds. I'd like to hope that it was fast for her. But I suspect it was, perhaps even literally, eternity. Please let me b wrong. I'm an atheist--please let me b wrong about that, too. I hope some all-loving god, like the 1 I used to believe in, collected her & wiped her memory of those last few seconds. It is the absolute least of what she deserved.

Sorry again, everyone. I hope u don't mind me dumping that here.
"Godzilla is a warning. A warning to each and every one of us. When mankind falls into conflict with nature, monsters are born."
Professor Hayashida

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Re: I never thot I'd b posting anything like this...
« Reply #68 on: April 19, 2013, 12:39:40 am »
Sorry again, everyone. I hope u don't mind me dumping that here.

It's a non-issue. Your apologies aren't necessary.

I'd say more but... yeah... don't stress about posting here.

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Re: I never thot I'd b posting anything like this...
« Reply #69 on: April 19, 2013, 06:33:24 pm »
Sorry again, everyone. I hope u don't mind me dumping that here.

it's been *counts on fingers* 11 years ago that my daughter died and some days it's like it was yesterday.

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Re: I never thot I'd b posting anything like this...
« Reply #70 on: April 20, 2013, 12:02:46 am »
it's been *counts on fingers* 11 years ago that my daughter died and some days it's like it was yesterday.

Boy, do I hear u on that 1. I have many nights when I dim the lights in the kitchen, & can barely look at the floor where Laura collapsed. I can still c...some of the more nightmarish things that happened after she collapsed, which I won't subject the readers to again.

Sorry about your daughter. I imagine some people may have told u u should b over it by now? Laura had a degree in thanatology, was a Chaplin in a critical care department of the hospital, & regularly gave palliative care & bereavement counselling. I used to say that she & Death were coworkers who gave each other a nod when she entered a critical patient's room. & she would b the 1st to tell u that no one has the wisdom or right to tell u how or how long u should grieve, & that everyone's xperience of another's death is unique, regardless of what Elizabeth Kubler-Ross says. She herself never recovered from her mother's death, in fact, I believe it contributed directly to her own death even though it was 6 years later.
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Re: I never thot I'd b posting anything like this...
« Reply #71 on: May 10, 2013, 12:13:20 am »
It sounds strongly, that she had a condition called Laryngospasm...it is where the vocal cords basically swell, and cut off the airway to the lungs. It mostly occurs at night, when the person is laying down (asleep) and normally lasts only a few minutes. Basically, in a nutshell, people who have GERD will expierence this type of spasm when stomach acid reaches into the esophagus, and in turn, causes the airway to close. The fact that she started caughing more (randomly) and that she had a swollen tongue suggests strongly that she had GERD.

My God, I think u may have nailed it. Why didn't the ENT specialist mention this 1?...

Thanks for this. I'm going to email the link to the ENT specialist that worked on her, & c what he thinks. But of all the suggestions I've heard, this 1 sounds the closest to the symptoms I witnessed. & there was so suspicion that Laura had acid reflux, as well as several of the other conditions that lead to GERD. If so, it may help us determine if my son is in any danger (or even me--I've wondered if she could have been exposed to something here in the house...).

I haven't heard back from the ENT specialist, but I already know what hes going to say. The autopsy showed no trauma to her throat, such as would have been caused by acid reflux irritating the area, & no signs of swelling. I think this is going to stay a mystery. Thanks for your efforts, though. I imagine the ENT specialist appreciates it too, last I knew he was grasping at straws trying to find an explanation. ...In fact, I'll reveal this embarrassing 1: 1 of the questions an assistant asked us (this occured several months before Laura died), while looking for another cause for her throat swelling other than lymphoma, was if we had been having particularly rough oral sex :lol...

...Oh, & the answer was 'no'.
"Godzilla is a warning. A warning to each and every one of us. When mankind falls into conflict with nature, monsters are born."
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Re: I never thot I'd b posting anything like this...
« Reply #72 on: May 12, 2013, 04:22:21 pm »
In fact, I'll reveal this embarrassing 1: 1 of the questions an assistant asked us (this occured several months before Laura died), while looking for another cause for her throat swelling other than lymphoma, was if we had been having particularly rough oral sex :lol...

...Oh, & the answer was 'no'.

Well, I coulda told them that. You don't fit the socio-economic profile.

Anyways, I know you think the ENT is a nice person and all, but really when presenting information that could embarrass, let alone incriminate someone, you get a second opinion.
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Re: I never thot I'd b posting anything like this...
« Reply #73 on: May 17, 2013, 12:55:52 am »
1st, still no word from the financial planner. I'll try to call him later today, but I already know its gonna b a very busy day, so I can't promise I'll get to it. Soon, in any event. I'm a little perturbed he hasn't called me.

I just went back thru these posts to the very start, & I still can't really believe it all. I thot I might b surprised by my posts here, that they would look new somehow, or that there'd b elements to them that I'd forgotten, but, for the most part, they read & feel like a I could have written them a week ago at the latest.

& yet the changes have been profound, &, in the end, a surprising number of them have been positive.

I'm still not sure what we're gonna do about money. I know that, come what may, I am NOT returning to the kind of work I'd been doing. I felt like I was being lazy & selfish about this for quite a while, & then I saw a friend who hasn't seen me almost since the start of all this, & the look of shock on her face, coupled with her statement that I looked 10 years younger reminded me of all the evils of that job. I'd spent 13 years in a factory, doing work I hated, supporting an industry I don't believe in, for people who couldn't have cared less if we lived or died. I averaged 5 hours of sleep a night. Many nights I remember stumbling half asleep thru the streets when I should have been in bed, walking H's service dog. There were days, too, when I was working & almost collapsed because I was falling asleep on my feet. My weight had crept up to almost 240, I was too tired to b interested in anything, & life had, in general, become an endless grey hell. I'm absolutely certain that I wouldn't have lived another decade, &, in fact, I was counting on it.

Wow. I don't think I'd realized just how bad it'd been. I've never summed it all up like that. That clenches it--I'm NOT going back to anything like the previous work I've done, come what may.

& theres another piece of good news I c I've not mentioned in the past posts--sometime in late Febuary, Harrison suddenly started to eat so much that I have only had to give him 2 small tube feedings since, & both of those were in Febuary. He's now averaging somewhere around 1500 calories a day. The only possible explanation I can c for it is that hes gone thru a growth spurt--his height has gone up by about 1 1/2" since Febuary. We're still a long way from removing the 'tube--we have to b absolutely sure hes not going to regress, but its certainly a big step in the right direction. Now we're working on WHAT he eats. lol

Well, I hadn't intended to go on this long, but I'm glad I did. Now, off to bed. Take care everyone, &, as always, thanks, thanks, thanks :notworthy:

Craig
« Last Edit: May 17, 2013, 12:59:29 am by lcmgadgets »
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Re: I never thot I'd b posting anything like this...
« Reply #74 on: June 02, 2013, 01:07:05 am »
Hello and good evening again.

Its been a little while since I've last been on (and posted) here - mostly trying to tackle the driving cab.  I just wanted to take a moment to tell ya my friend, that all of us at the Clark residence have been thinking and saying prayers for you and your family. 

We hope all is getting better  :)


LC

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Re: I never thot I'd b posting anything like this...
« Reply #75 on: June 03, 2013, 10:37:30 am »
It is, thanks. It doesn't 'go away', of course, but it does get a little easier to bear every day. H' is doing amazingly well, as I posted earlier. We still get short crying bouts, which I do not discourage, of course.Its strange to think that I have the advantage of having known an expert on all things about death to draw from. Without her wisdom behind me ( which, of course, I only remember a fraction of, unfortunately) I KNOW I would have made several mistakes by now.

& I have a milestone coming up. I've talked about a garage sale for some time, now, & it's supposed to happen sometime late this month. & it's time I cleared out Laura's clothes. I'm not looking forward to these steps, but they r necessary, esp. if we're going to rent out the basement. This'll b very hard for both of us to do...I've got to b sure H' is ready.

The other thing I want to happen is for the financial planner to get back to me. I finally left him a message last week. I hope he responds soon.

& some of u may have noticed my announcement of 'Project Legacy'. I haven't posted anything there in a while because I'm still setting up my little work room. But I will get back to it when I have something appropriate to post.
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Re: I never thot I'd b posting anything like this...
« Reply #76 on: June 10, 2013, 05:51:17 pm »
Okay, finally. Its June 10th, almost 9 months since Laura's death, & I finally have a simple & effective way for the many generous members here to contribute to a trust fund for my son. Sorry it's taken me so long to get this done, but I wanted it to b simple & secure for anyone to do.

Contribute to Harrison's RDSP. I wish I had thot of this before I maxed it out for this year. Our government matches contributions made into it (up to a max of $3500, in our case, for this year). Stupid of me not to think of this. But my financial planner assures me that over-contributing to it is still a good investment: Probably the simplest, safest (for the contributors) & least expensive (for me to set up), unless contributions came to a very large sum (I should have asked what that was, but I assume he means >$10,000) in which case it would make more sense to create a separate investment, & transfer money from it into H's RDSP each year.

So, if anyone still wants to contribute to Harrison's trust fund (& God bless those of u who have offered), I'm instructed to tell u to write a cheque, payable to DundeeWealth, & in memo on the cheque write re account # 77D0185-C. Mail it to me:

Craig Munns
291 Panorama Crescent
London, ON
Canada
N5Z 3H2

I'll take the cheques to Wayne (my financial planner) as they accumulate--he tells me minimum deposit into the RDSP is $50.

...& now that I've actually gone over these instructions, I wonder how the heck this's supposed to b secure for the contributors?? There's nothing here to actually show that this account is my son's, or that I can't get into it. (On a side note, Wayne made it clear to me that I CAN get into H's RDSP, if I can demonstrate that I'm doing so in his best interest, & show where the money is going). So, I guess at this point, I'll ask everyone out there in byoac forum land: Do u want me to nail this down further?

Blast it. Sorry everyone. The more I look at this, & remember that many of u r going out of your way to help us out, simply out of kindness, I become more convinced that I could do better. If people want me to, I'll go back to the lawyer, spell out exactly what I need (a trust fund for my son, a simple way for people to contribute to it, a guarantee to the contributor that only my son can withdraw from it when it comes due), hold out a fist full of cash, & tell him to make it happen. I realize now that thats what I should have done 8 months ago. Boy am I dense!
"Godzilla is a warning. A warning to each and every one of us. When mankind falls into conflict with nature, monsters are born."
Professor Hayashida

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Re: I never thot I'd b posting anything like this...
« Reply #77 on: June 10, 2013, 07:20:21 pm »
Or...

post a paypal address and those that want can blast you some money.  Those that don't won't.  I have no reason to think that your boy's best interests aren't at heart so I think I can trust you to aggregate some funds and cut the check yourself.  Don't jump through hoops.  A good plan now is better than a perfect plan tomorrow.   :cheers:

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Re: I never thot I'd b posting anything like this...
« Reply #78 on: June 10, 2013, 09:16:36 pm »
Paypal is also an easier option for those of us overseas. I'm keen to throw some money your way but don't have a chequebook and even if I did I'm not sure how it would work internationally. As Le Chuck said, I have no reason to think that Harrison's best interests will be overlooked.
Never argue with an idiot, he'll just drag you down to his level and beat you with experience.

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Re: I never thot I'd b posting anything like this...
« Reply #79 on: June 11, 2013, 03:16:47 am »
paypal has a nasty habit of freezing accounts if they think you are using it illegally. this would include such things as just receiving money and then transferring it to a bank account. They look at it as a money laundering activity.

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Re: I never thot I'd b posting anything like this...
« Reply #80 on: June 11, 2013, 10:14:27 am »
Yeah, I thot paypal'd b a good idea, too. Didn't know about the money laundering issue. I'll post my paypal anyway, contact them & c if I can't avoid a problem. My paypal is: lcmgadgets@live.com.

In other news, I got a response from the ENT specialist concerning thurmansevolution's suggestion that GERDs may have been involved. Laura DID have acid reflux, & was on antacids for it, but he still thinks its a possible explanation for what happened. He does not think she had larynogospasm (or would that b; she had larynospasms?)

We'll never know for sure, but that now seems to b the likeliest explanation.
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Re: I never thot I'd b posting anything like this...
« Reply #81 on: June 11, 2013, 02:52:38 pm »
i'm sure if it's for just a few transactions it would be fine, but you never know. paypal can be finicky...the terms of service state they can shut you down and cut you off without notice and keep all your funds.

Vigo

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Re: I never thot I'd b posting anything like this...
« Reply #82 on: June 11, 2013, 03:25:54 pm »
Ask people to send it as a personal transaction, with reason of Other. I used paypal transactions quite a bit, and found that Paypal is less likely to question hassle you about payments if they are not classified as purchases or donations. After all, this is just a private transfer from friends. Having it classified as a personal transaction avoids some fees as well if I remember right.

And I think you have to get around the $10,000 range before they really start to care, at least here in the US.

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Re: I never thot I'd b posting anything like this...
« Reply #83 on: June 11, 2013, 06:55:11 pm »
Can the OP fix the spelling mistake on the Subject title?  Thot = Thought

It is bugging me.

Thanks.
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lcmgadgets

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Re: I never thought I'd b posting anything like this...
« Reply #84 on: June 11, 2013, 10:00:59 pm »
Can the OP fix the spelling mistake on the Subject title?  Thot = Thought

 :lol Sorry. Yeah, I've gotten lazy concerning my typing, & use my own style of abbreviations where possible. I've been told before about my use of 'enuf', & 'thot' amongst others. I'll try to curb it.

Thanks again for the suggestions concerning paypal.
« Last Edit: July 10, 2013, 09:36:47 am by lcmgadgets »
"Godzilla is a warning. A warning to each and every one of us. When mankind falls into conflict with nature, monsters are born."
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Re: I never thot I'd b posting anything like this...
« Reply #85 on: August 22, 2013, 07:12:03 am »
Warning: this message starts light & quickly gets pretty grim (I added this sentence after I wrote what's below).

Just thought I'd tell everyone that Harrison & I have been in Paris since the 19th (we return to The Great White North on the 24th). We'd starting planning this trip about 2 years ago, we were booked & ready to go, & then had to cancel when Laura got sick (thank god for travel insurance, or we would have been out a lot of money). As the many examinations started, & all the signs pointed to lymphoma, Laura began saying that she had a feeling she wasn't going to make it to France.

She made me promise that H' & I still go, no matter what happened.

Then, when we got the news on that Friday way back last September that she didn't have cancer, & that her throat was wide open & looked great, & that in any event the meds were keeping the swelling down, I remember her smiling as we headed out of the ENT's office & saying that she guessed she was going to make it to Paris after all. & 15 hours later she was dead.

& here I am now, 5 days in Paris with 1 & a bit to go (endless thanks to friends of ours who financed this trip) typing this in a hotel in the City of Lights, with H' still asleep from xhaustion :) (hes had a great time) beside me (gonna have to wake him up, it's almost 1pm here). Laura would have loved it. Paris is...astounding beyond my wildest dreams. (If u can ever afford it, go. & I don't make recommendations like this lightly).


& life sucks, & then u choke to death for no reason anyone can determine, in reason shredding terror on your kitchen floor. & I'm crying again, 1st time in months.

We made it, Laura. F**k you, to the god I no longer believe in.
"Godzilla is a warning. A warning to each and every one of us. When mankind falls into conflict with nature, monsters are born."
Professor Hayashida

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Re: I never thot I'd b posting anything like this...
« Reply #86 on: August 22, 2013, 07:49:19 am »
F**k you, to the god I no longer believe in.

That bothers me LC.  I can only scarcely understand your pain.  My wife has a serious illness also.  I don't know what I would do without her but to blame God, if one exists, is pointless.  If I understand you correctly you are blaming God for your loss.  I would not.  Without your wife you would not have your son.  And from what I read it sounds like you love him just as much as you love your wife.  Don't blame God for your loss but be thankful that you still have your son and through your son your wife can live on.  Again I am sorry for the untimely loss of your wife but be productive about it and spend your time celebrating her love.     

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Re: I never thot I'd b posting anything like this...
« Reply #87 on: August 22, 2013, 07:10:07 pm »
I hope things work out for u & your wife. Watch that illness closely, & take no chances. Believe me, I know, 1st hand, just how fragile & uncertain life is, & how quickly & mysteriously it can end. I used to think that Laura was overprotective of Harrison. Now I know why. She understood what I learned, because she worked with people dying & dead everyday, including, regularly, babies. So now u can bet that I'm over protective of him, too, & that, ultimately, there is no such thing.

I'm not serious about blaming god. I just needed something to vent at at that moment, & a target that can't hurt is convenient. Even when I still believed, I knew that God was a big enuf person to b sworn at. & now, I'm an atheist, I've been 1 for about a decade now. So I'm not really blaming anyone, just the random injustice of reality.  :)

& you're right, I'm crazy about my son, & need to remember to thank the same empty universe for his existence. Without him, I doubt I could go on.
"Godzilla is a warning. A warning to each and every one of us. When mankind falls into conflict with nature, monsters are born."
Professor Hayashida

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Re: I never thot I'd b posting anything like this...
« Reply #88 on: August 22, 2013, 07:26:43 pm »
LC, I just want to say that I am really sorry for your loss.  I just lost a friend of mine who I worked with in the Navy for a number of years.  Great guy...real family man who literally just got his law degree.  He just dropped one day and that was that.  He was the same age as me.  Certainly puts arguments about straight versus curved button layouts in perspective.  Although you are an atheist, I would say live your live to the fullest, each and every day...with the belief that your wife is still really with you.  Reconcile whatever issues may exist between you and others....no matter how trivial they may seem at this moment.   Most of all, take good care of yourself so you can see your son grow, live, and learn.

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Re: I never thot I'd b posting anything like this...
« Reply #89 on: August 25, 2013, 10:49:20 am »
Oh man, sorry for your loss. & his.

My wife, as a palliative care Chaplin, saw people 'drop', as u say, for no reason that could b determined, numerous times. The youngest I remember her mentioning was 16 (other than babies dying of SIDS).

In my opinion, I would say u just gave some of the best advice I've ever heard in such a short message.

Oh, & as for my atheism, I still worship. Truth, Love, Beauty, have always been gods in my personal pantheon. If I think a bit I'll come up with more. Justice. The Good (whatever that is--I think it has a lot to do with intentions & acts of kindness & compassion (as usual, not my material--I stole that from Victor Frankl)).

& I may well have a more typical god again someday. I'm not looking because everything I'll find won't b it, just, at best, little pieces of it. & I do still have faith, absolute faith, that this will all work itself out in the long run; that if this is some great cosmic Oz & there actually is a Wizard behind the curtain, then all of this down to the decay of the tiniest sub atomic particle is part of the plan, & things r evolving exactly the way they must. & if it isn't, I'll never know. That last may sound bleak, but, in a very real sense, I don't think it is.

Anyway, H' needs my help right now, so take care til next time.
"Godzilla is a warning. A warning to each and every one of us. When mankind falls into conflict with nature, monsters are born."
Professor Hayashida

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Re: I never thot I'd b posting anything like this...
« Reply #90 on: November 17, 2013, 09:34:52 pm »
Well.

Its been 14 months to the day since Laura was pronounced. She would b the 1st 1 to say that everyone grieves differently, at different times & for different amounts of time, & that no one has the wisdom, training, or even the right, to tell anyone else how that should unfold.

I'll never b completely over this. But I think I've come a long way. I still sleep with the baby monitor on, & a phone on the nightstand with 911 speed prepped. & I still replay those last few terrible moments of her life in my mind from time to time. But if the monitor's batteries die during the night, I don't immediately get up, check on H', & go for fresh batteries. We've created new lives/routines for ourselves. Our practical problems aren't over yet--finances are still an issue, but I'm working on it, & the future that way doesn't look as grim as it did. We've got a sort-of tenant in our basement--sort of in that the basement isn't an apartment yet, but with my tenant/friend's help, & the reduced rent hes paying at present, our savings will, I hope, carry us until the work's done & we can get it rented out properly for an amount that can sustain us. I hope.

Its harder to tell with H', but I think hes come a long way, too. We still talk about mommy, but its more remembering things we did than what happened to her in the end. Hes adjusted well to going to public school, made friends & has new hobbies & activities. Hes still eating--I think our tube feed days r over (if he makes it to March, we'll b talking to the doctor about removing his g-tube). All bets r off as to what his future holds, but it was always that way.

I do not think we will ever understand what happened on that night 14 months ago. I still say her airway swelled shut, despite all odds. In the back on my mind I continue to watch for possible causes around our house--mold, toxins, anything that might cause an allergic reaction (I don't think thats what happened, but since we don't know...) & I watch H', in case this might b something hereditary (again, that seems unlikely, as no one else in either of our families ever displayed any symptoms similar to Laura's swelling, but...).

I had thought, when I started this post, that I was using it to say good bye. I see now that its not yet time. It probably never will b, completely. I should know better. I learned a lot about death & dying from my wife, who forgot more about it than most of us will ever know. Had she lived, I'm convinced she would have revolutionized the way we think & deal with what's coming for all of us (no exaggeration). But perhaps this is the beginning of my good bye.

I want again, to thank all my friends here, who have given so much support & encouragement, even to the point of talking of building my 'white elephant' for me. After some initial excitement about that prospect, I realized that if I allowed that, I would always feel I cheated myself, & took advantage of you. I will, however, beg for & I'm sure receive a lot of assistance as I bring my cab dream to life. I may even require some spoon feeding of instructions. lol. I hope u will continue to b patient with me.

To all of u,  :notworthy:

"Godzilla is a warning. A warning to each and every one of us. When mankind falls into conflict with nature, monsters are born."
Professor Hayashida

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Re: I never thought I'd b posting anything like this...
« Reply #91 on: November 18, 2013, 12:04:18 am »
 :cheers:

well said. do your thing man. that's all you can do. keep plugging along at it.

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Re: I never thought I'd b posting anything like this...
« Reply #92 on: March 06, 2014, 10:08:10 am »
Well, I'm back here again, with good news.

My son has achieved another milestone. He's been eating more than enough by mouth now for more than a year, & so, as we'd (Laura, myself, his paediatrician, & his dietician) planned, we've removed his g-tube permanently. Laura would b amazed & proud as hell to see what he's achieved since she died. Go, Harrison!
"Godzilla is a warning. A warning to each and every one of us. When mankind falls into conflict with nature, monsters are born."
Professor Hayashida

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Re: I never thought I'd b posting anything like this...
« Reply #93 on: March 06, 2014, 10:20:46 am »
  :cheers:

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Re: I never thought I'd b posting anything like this...
« Reply #94 on: March 06, 2014, 04:18:08 pm »
awesome, good job buddy. eat it up!