Old 03-04-2018, 10:20 PM #1 (permalink)
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Default Venting tomorrow---which will surely cause more venting

I think I'm officially graduating from "we're making the most of it while we can" to "Yep, this really, really sucks".

It's been a tough few months, with five ER visits and two hospital stays, three cases of pneumonia and one of the flue. No Matt, when you stop choking on every bite or sip it does not mean things got better. It means your body is so used to aspirating that it no longer reacts.

This afternoon we checked into the Durham VA MICU, where Matt will be trached and vented tomorrow morning. I'm actually ready for it, since that's what he wants to do. I certainly didn't want to do it as an emergency measure. Hopefully we will be home in a couple of days, where we should have nursing help from the VA.

I must confess that I finally understand how it can take an hour or more to get a PALS tucked in for the night....and this is someone who spent the entire day in bed. Matt no longer has any functional use of his hands--they move a bit, but they won't do anything for him. Scratch, rub, change the channel, blow, pick, wipe.... If you've been there you know what I mean, and if you're not there yet it's too soon to worry about it.

I'm no longer friendly at 3am. In fact, it seems I'm downright ugly at 3am. I will schedule at least one overnight shift a week. Other shifts I think may start at 7am...so they can handle the morning routine and I can go back to bed in another room. In this we are extremely fortunate. I DO NOT function well without sleep. I mean 7 good hours of sleep. If I had to do this all by myself, well, I don't know how long either of us would survive. I think perhaps as my darling was burning up his muscles and strength and hastening his progression with all of our adventures and travels, I was also burning up my reserves.

So, a new phase of this adventure starts tomorrow. No more slipping out for pizza and leaving him alone for 20 minutes. Oh...never mind....he was told to stop eating by mouth two weeks ago, so it's time for me to start that diet I've been putting off until he stopped eating. I do believe I will research diet services that send prepared food. Who wants to cook? I'd better do it soon--I've had nachos for dinner three times in the past week. That's not going to help anything!

I've been in a pretty deep funk for the past six months or so. This decline has been hard to take. I just haven't been able to find anything positive to share, and I hate being a downer all the time. Now that the terrible event is upon us, well, I almost feel a sense of relief. How stupid does that sound? I can just see myself re-reading this a year from now and shaking my head at my foolishness. Or maybe it's just more self-preservation.

The RT here in the hospital just turned the alarms on the vent on. Crap. Why do I want to hear an apnea alarm when the vent self adjusts to handle the problem? Yeah--that might not stick once I"m home. I do need to learn about the other alarms, however.

ok...off to get something for his headache. Every pain in his body need. s a different medication.

Becky
Not feeling very Queenly tonight. Nothing comes to mind.
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Old 03-04-2018, 11:14 PM #2 (permalink)
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Default Re: Venting tomorrow---which will surely cause more venting

Holding tight to your hand through this Becky - PM me here or FB any time xxx

Here we go - you are queen of something alright, I reckon we will have the title well sorted by the time you get home eh

None of us p*$$ rainbows really hon, so don't sweat it.
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Old 03-05-2018, 05:16 AM #3 (permalink)
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Default Re: Venting tomorrow---which will surely cause more venting

Nuts...sending you a HUGE hug. and please do not apologize for "being a downer". Who wouldn't be down with all of this on their shoulders and their minds? Your exhausted.
I'll be thinking of you and hoping that this new chapter of your journey goes as well as can be expected.
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Old 03-05-2018, 05:52 AM #4 (permalink)
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Default Re: Venting tomorrow---which will surely cause more venting

Many warm hugs & prayers for today and the future.

Thinking of you,
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Old 03-05-2018, 10:58 AM #5 (permalink)
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Default Re: Venting tomorrow---which will surely cause more venting

<Big Hugs> sent your way, Becky!
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Old 03-05-2018, 11:13 AM #6 (permalink)
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Default Re: Venting tomorrow---which will surely cause more venting

Sending strength and love.

Please never hesitate to post. Up or down we are here for you and Matt
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Old 03-05-2018, 02:22 PM #7 (permalink)
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Default Re: Venting tomorrow---which will surely cause more venting

Becky,

Positive thoughts for you and Matt. You gave Matt some incredibly fantastic memories WAY beyond what any CALS should be expected to do.

You might want to think about starting a LotsaHelpingHands page. Friends and family can sign up to support you by bringing you meals, doing errands, giving you some time off, if they're willing to be trained on the vent, etc. When I sprained my ankle and couldn't drive, several friends helped me in this way.
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Old 03-05-2018, 02:45 PM #8 (permalink)
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Default Re: Venting tomorrow---which will surely cause more venting

It's a good thing you went on trips. My husband has been on a vent now for about a year, he can still walk some and use his hands but so far has not been bad. We are actually looking for a motorhome so we can still go places with all his stuff and not lug it in and out of a hotel. My prayers are with you.
Debbie
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Old 03-05-2018, 03:56 PM #9 (permalink)
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Default Re: Venting tomorrow---which will surely cause more venting

Becky. Sent you a message, but want to say here that you need to take some deep breaths. While there are vent alarms, the ones on the trilogy are much less annoying than what you’ll face in the hospital.

If the one at home goes off a lot, check the settings. Good chance the high pressure alarm is the culprit, as long as the hose has not popped off. It can an does happen, but is quite rare.

When Brian was first trached and venting they had the high pressure alarm set to low. Man that thing kept us up at night until we got the RT to the house and figured out the problem. If you get lots of alarms, call the RT. You should not. Now Brian’s alarm is a rare thing.

Once Matt is used to the vent, he should sleep through the night. We have our times when that was not true, when Brian finally lost his voice, but otherwise sleep is generally good unless he gets sick.

You are blessed to have the VA supporting you with nursing.

Know you are in my thoughts and prayers, as is Matt. Not sure if he can email, but I know Brian would definitely reply with answers if he ever feels the need.

Hugs,

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Old 03-05-2018, 05:08 PM #10 (permalink)
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Default Re: Venting tomorrow---which will surely cause more venting

Just a quick post before I start the one hour routine to go to bed. ;- )

Hope you don't regret adventures and travels. What's grinding us down is ALS. Being packed in cotton won't change that in the long run, so better do what's fun and possible right away.

I wish you all the strength in the world for this new stage!
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Old 03-05-2018, 05:08 PM #11 (permalink)
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Default Re: Venting tomorrow---which will surely cause more venting

Thinking of you and Matt today, Becky.

I know you both will make the most of your next chapter together.

Best,
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Old 03-05-2018, 08:58 PM #12 (permalink)
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Default Re: Venting tomorrow---which will surely cause more venting

So sorry Becky. Your post brings all that back. I know exactly where you are. You are some kind of trooper. I was too, and I know that you will continue to find the strength. No one in your shoes is friendly at 3 am. I hated myself at 3 am. You will soon become familiar with all the alarms. I hope you are right about being home in a couple of days, but sadly, I don't think it will be that easy. The next 6 weeks will be very difficult. In my experience, it took that long for the body to heal as well as become accustomed to the new hardware violating his windpipe. I'm saying a prayer for you both to have the strength to overcome the next days.

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Old 03-05-2018, 09:18 PM #13 (permalink)
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Default Re: Venting tomorrow---which will surely cause more venting

The Phoenix VA sent my husband to a skilled nursing center while everything was being setup and for me to learn how to do his care.
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Old 03-05-2018, 10:43 PM #14 (permalink)
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Default Re: Venting tomorrow---which will surely cause more venting

Becky, my thoughts are with you and Matt. My husband was sent to rehab before he came home and I'm glad he was, it gave both of us time to get more comfortable with all the equipment and procedures . Kate
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Old 03-05-2018, 10:47 PM #15 (permalink)
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Default Re: Venting tomorrow---which will surely cause more venting

Been thinking of you and Matt all day today. I hope everything went well. Hope you can get a bit of rest too. Hugs.
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