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Fri Nov 28, 2014 at 08:53 AM PST

So, how would YOU handle it?

by Alexandra Lynch

I must begin by saying that for me, Thanksgiving kicks off the Happy Month. I am a December baby, and so is my father and another cousin or two. Then I married another one. Plus, there was Christmas, and New Year's to finish it all up with a bang. For me growing up, it meant the season of special dinners at Grandma's with people being happy and getting presents every single weekend, and then there was Christmas where EVERYONE got to give and get presents, and then a last happy party at my aunt's house before we took down the tree and returned to normal life. I still love the season, even though time has taken my grandparents' generation of relatives and my others are far-flung these days, and don't get together at all.  I still enjoy it, decorate, bake cookies and give them away, and delight in doing my own birthday the way I want it, and that of my husband, the way he wants it.

If he'd be clear about it.

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Sat Oct 11, 2014 at 10:00 AM PDT

A new road for us

by Alexandra Lynch

As many of you know, this year has been an interesting one, in the Chinese curse sense.

But things are better. Things will continue better.

On September 29th, we got a letter from Social Security. FINALLY, we said. We can call our representative tonight, set up a meeting to discuss what we do now that we've been refused....

...it said "you have been approved..."
and we both burst into tears.

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Tue Jul 01, 2014 at 12:04 PM PDT

We have a timeline! Whoa!

by Alexandra Lynch

We've been drifting along with him just getting better and better, and suddenly we got a timeline from physical therapy: they think they can have him ready to go home at the end of next week, the 11th of July.

Holy shit, I got work to do.

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Thu Jun 26, 2014 at 01:51 PM PDT

And just like that, it changed

by Alexandra Lynch

One of the features of my husband's life that neither of us was looking forward to was the routine required by insulin-dependent diabetes. He'd received the diagnosis when he went into the hospital.

It wasn't a huge surprise; he did weigh 334 pounds and was pretty sedentary and had an issue with food addiction. But neither of us were looking forward to that routine and the real worry was cost. Medicare might pay for testing supplies, but the insulin was our problem, and it was expensive. What would we do between the time he got out and when we got the disability?

I shoved this resolutely away; at that point, he was looking at open-heart surgery, and time enough to worry when they talked about sending him home.

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Well, it's been a while since the last update, but in my defense, I've been busy. And so has Bear.

Currently he's sitting up watching a movie. And when I say sitting up, I mean it.
Bear at end of Seton time

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Fri Jun 13, 2014 at 11:57 AM PDT

Breathing, speaking, eating...

by Alexandra Lynch

All things we take for granted, usually. We haven't been lately, and progress back has been achingly slow.

They have weaned Bear off the ventilator. It sits in the corner of his room. If he doesn't need it over the weekend, Monday it will go away for good, and they will discuss removing his trache and letting that heal up.

Though one doesn't think about it, all the muscles of the body weaken, including the ones in your throat that accomplish swallowing and the nerves that sense things where they shouldn't be also are dulled by the tubes down the throat.  So the other big deal has been swallowing. He was only allowed ice chips for a week, then was allowed water and ice after passing a pudding swallow test. (In that, they give him pudding with blue dye in it, then suction out his airway. If blue shows up in the tube, test failed. No blue is a success.) The following day, they took him up to the x-ray room, and he did a barium swallow, and passed that with some reservations. But he is on solid food, and water, and they will give him another test in a week and see where he's at. Lunch today was a turkey manhattan and corn.

He is still very very weak. I fed him half his meal because he was too weak in hand and arm to manage. He is sitting up in a stable fashion, and can move around some in the bed. He'd move better if he were a more slender man, but he still has a massive belly, and that does weigh him down. But they are working with that too, and every day someone comes in and exercises him. It doesn't take much to wear him out, though.

As to myself, I'm managing okay. I have food stamps to eat on, and have gas enough for another week. I think I can ask my mom for more, since I'm only doing a little driving on the weekends and a very few miles during the week. I'm getting better about sleeping in the chair, and Bear is sleeping better now that the vent is off him, which helps us both. I'll be headed home tonight to feed cats, clean their boxes, and spend time with my boyfriend and my other friends, do laundry, see my kids, and go to the store and oh, yes, spend two nights In A Real Bed. (sigh of anticipatory bliss)

The fundraising is going really, really well. I've got enough for the water and electricity, but until he's needing me with him a little less, I'm not going to get it turned on. When I do get it on I'll spend a couple days at home Just Working On House, with him safely out of the way.

And below the fold, today's big victory.....

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Wed May 28, 2014 at 07:24 AM PDT

The sleeper awakens!

by Alexandra Lynch

Bear is awake!

They took him for his tracheotomy yesterday morning, and woke him up this morning. They will start ventilator weaning tomorrow. That's a week to two week long process.

I'm very close to getting the electricity turned on, but I still need a little help, about $350. With temperatures going up in the high eighties during the day, he will definitely need air conditioning when he goes home, or he'll have asthma attacks and not be able to sleep.  And I would very much appreciate a fan at night. If you can contribute a bit, please, please do. I'd really like to get the power on and start getting things ready for him to come home.

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Thu May 22, 2014 at 07:48 AM PDT

I want him to come home!

by Alexandra Lynch

I came in today to some good news. They will do his tracheotomy on Tuesday, May 27, and wake him up the same day. He will have been asleep 22 days...most of the month. It's been a long month for me. It's the longest we've been without contact in 25 years. But now that I have an end date, I can go through the rest of it with a courageous smile.

But this means I've got to get the power on. I'm very close....I just need $380 more.  If I could get that accumulated over the weekend, I could begin to get the funds next week so I could get the power and water on by the beginning of June. I need to get the power on before he comes home; I had a hard time sleeping last night without a fan on, despite open windows, and Bear runs hot. Plus, he's got asthma, so he's going to need to sleep somewhere with controlled temperature and humidity. Please, my friends, help it be my house. I have missed him so very much. If you can donate even a little bit, the link is http://www.gofundme.com/...

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Sat May 17, 2014 at 06:55 AM PDT

A move and a plan and a plea

by Alexandra Lynch

I walked in Friday to discover that they were moving Bear to another hospital. I was slightly annoyed, as apparently plans had been in the works for a few days and no one had bothered to let me in on them. But the move made sense. He is healed enough from the heart surgery that he no longer needs the heart hospital's facilities; what he needs now is specialty care to get him off the ventilator and rehabbed enough to come home. And that is what this hospital does. So we got him moved yesterday, and here we are today, with him still asleep and me here watching him sleep, and posting this update to you all.

The fundraiser is at 66 percent....so close, and yet so far. If you can help at all, I would be endlessly grateful. http://www.gofundme.com/... is the link to donate. The backstory is below the orange swirl.

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Mon May 12, 2014 at 07:42 AM PDT

Well, this sucks.

by Alexandra Lynch

Bear is much less deeply asleep these days. If I speak to him, he twitches his lids a bit, or moves a hand. Still, if they let up on the sedation, they'd have to pull his tubes, and they are not there yet. They are hanging some blood for him today. Now I know what type he is...O positive, same as I am. Apparently he was low. He looks a lot better. They're going to stop the antibiotic today, and that should make his diarrhea stop, and then it's a matter of getting his oxygen right and waking him up. This is not the sucky part.

I stopped off at the city building to find out the exact total I need to get things back on. Apparently I misremembered and calculated too low. $1999.67. It's...disheartening... to go from "I can get it on soon" to "only halfway."  But I'd rather know than not. Again, if you want to help me eat the elephant, the GofundMe link is here.

Also, all the driving plus the weather rolling through Indiana has the arthritis in my foot yelling very loudly. I am attempting to ignore it, because that's the only real tool I have in the arsenal just now.

I'm in a good-ish mood, but man, it's being eroded fast by all this.

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Thu May 08, 2014 at 08:14 AM PDT

Not freaking out just yet....

by Alexandra Lynch

I was awakened this morning by Stupid Junior Cat going "YOW! YOW! YOW!" with the regularity of an alarm clock behind my shoulder. I swore at him, swatted at him, finally accepted that I was awake at 7:30 am, and went to see what his problem was.

"The water dish! It is new and strange!"
"I changed the water dish at nine am yesterday. Idiot boy."
(sigh)

As I drove the hour's drive over to the hospital, I got a call from the pulmonologist asking permission to do a small procedure to suction Bear's bronchial tubes so that his right lung could inflate properly. I said yes, of course, and they were in the middle of the procedure when I showed up. The doctor came to talk with me, and he said that they had got quite a lot of mucus out, that it did not appear to be infected, and that he should be able to breathe much better now.

It was the nurses who were discussing the collapsed lung they'd reinflated, and at that point part of me really wanted to have a meltdown. I got that under control, since the problem, however serious it sounded, had been handled and the situation resolved.

He is running a bit of a fever, and they have started him on antibiotics, and an infectious disease specialist is coming over this afternoon sometime.

He's sick, but he's in the right place, and in good hands, and I am not quite ready to freak out just yet.

If you wish to contribute more than good wishes, please donate here:  http://www.gofundme.com/...

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Wed May 07, 2014 at 10:40 AM PDT

Ventilators and donations

by Alexandra Lynch

Well, the update on Bear is not so great. He couldn't cough very well and his blood gases weren't good, so back on the ventilator he went, and there he'll stay all day. This was not the way I wanted this to go, but it is what it is.

However, you all have done an amazing thing. I asked for $2000 on the gofundme, and the immediately critical portion of that is $1200, which will pay off the bundled city water/power bill and let me get that turned back on. (The rest of it is the gas bill (hot water, stove, and heat) and the phone/internet and deposits required to restore services.)

When I came in today, the donations totalled $800. 2/3 of what I need for that big bill. I am absolutely thrilled: it's much easier for me to find $400 locally than $1200. I cannot thank you all enough.

The link is http://www.gofundme.com/... , and of course you're welcome to get the total higher. My thanks to you all for all the words of support and the advice so far.

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