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Zina Perry

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Hello,
My husband, Mike is currently in ICU and has been since May 19th. He had to be placed on a ventilator and the doctor wanted to cut it off or send him to a nursing home. I said no and have finally got the hospital to agree to bringing him home on a vent. Now, they tell me that I need to have at least 6 people trained on how to care for him at home and take vent training. I have 2 sons and a daughter in law that is a RN. I don't think I would leave him with just anyone. As of now he has a lot of fluid, but once its gone I am convinced he will walk again. The only symptom he has is a paralyzed diaphram. I know it will be a tough job, but I know I can do it. How many of you have people help in shifts. I know that if I have appointments or need to shop my daughter in law will stay with him. I can nap when he does and I think I can do it. I have been giving him total care at the hospital for 10 days now and together we have managed to do everything. Please give me suggestions on being at home on a vent and any issues that I might consider.

God Bless,
Zina
 

CindyM

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Well, what do they think will be gained from putting him in a nursing home? Do they think they can prolong his life? Maybe they are just afraid of a lawsuit.

But you should be able to take care of him, from all I have read here and elsewhere. True, you may need help so I am glad you have people willing to be trained. But a lot of people believe that carefully trained family members can do a better job than harried and under-paid staff.

Of course I say this with NO experience and NO training. So take it for what it is worth. I'm just now being DX'd with a paralyzed diaphragm and do not even have my bi pap yet, so all I have to offer is a lot of recent research. :-D
 

Al

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Hi Zina. Sorry about your husband's progression. Have you read Mike aka Quadbliss's website? I think he offers vent tips there.
AL.
 

fiddleplayer51

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Zina,
You're a real trooper and I know you'll succeed! Thank goodness for family! You're one of the lucky ones and I'm glad for you.
I hope you get some good suggestions and tips here about what to look for.
All the best,
Jane
 

quadbliss

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Hi Zina,

Taking care of a vent patience at home is actually easier then at the hospital. You can spread out a little, and organize things the way you want them. After some time, everything will begin to become routine.

One thing to consider though. If Mike doesn't sleep well though the night, Eventually, you may become fatigued. Make sure you get some good sleep meds prescribed for him before you leave the hospital.

The hospital's criteria for release can seem arbitrary, but I would play along. Try to find a couple more people to train. It doesn't mean you have to use them. :-D

Mike
 

freddiesnetty

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Thanks Again!

I have been up all night freaking out about this post, you see Freddie is going to go into surgery next monday for a trach, I read these posts and there is no way I have this huge team to help me....But I was worried that they would keep him and not let me take him home, well when I woke up(actually waited for hours) I started calling everyone about the equipment and the hospital. They still hadn't called me to tell me whether to come in Sunday evening or Monday morning...I am thinking that they are not very organized. When I first scheduled this they scheduled it as a peg....I am thinking holy crap isn't the trach a little more important? Well cbs news called his doctor and before the media got all involved about 2 years ago the doc says to me" well this is alot of work and I don't think you can afford this or all the time" once he discovered that my hubby was "somebodY' but aren't we ALL! He immediately scheduled the trach...whew......that was figured out, but then I started thinking if I don't seem to have an army, they are not going to let him come home....Well I got on the horn and started calling people and low and behold our best friend is going through a divorce and offered to move in, another phone call and low and behold they can rotate their schedule.....So I am thinking as long as I have all these people show up at the hospital and train...........I should be ok......I will have 2 adults living with me.....I have often thought of us and my friends as "the rebel rock and rollers" We are stereotyped just cause we are musicians..........But how funny now all those weird hours we have kept for years are finally paying off, cause they are all just like us and you never know I could be b-b-quing at 2 or 3 in the morning (it took me awhile to adjust).......How funny that sometimes when It seems like it all is together and then at the last moment you really do have to double check with these docs.... So here is to all my musician friends"Thanks for staying up at nights" Quadbliss you are truly an inspiration to my husband....He says he wants to write some music for you picture slideshows! lol.......Thanks for all that yall do to get me through the days.....I couldn't do it sometimes
Lots of Hugs to all
Netty

Capt Al Freddie says happy birthday to you and he IS going to have a glass of wine for you and a toast!
 

brooksea

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Go Annette!

Don't let the medical professionals intimidate the musical professionals!

Although we may value their judgment, they are not GOD!

Like Mike says, play along. I have confidence that you can accomplish what you desire!

Please let us know how it goes!

We all are in this together and need each other!
 

freddiesnetty

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i just love your replies! They make me smile and I haven't smiled tooooo much today!

See you could be in the music biz, you have a sharp and witty way about you!

Thanks for making me smile!
netty
 

Al

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It was me that had the birthday Netty unless Capt. Al has one too by coincidence.
AL.
 

freddiesnetty

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Oops!

Well happy Birthday! My brain has not been functioning to well today........I knew it was you though!
so cheers!
Freddie and Netty
 

CindyM

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Keep us informed, Netty. And you too, Zina. We are all interested in how this works out for you guys.
 

joelc

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My family has just gone through two days of training on tracheostomy and vent care. I am scheduled for July 9th. I have been working on this for about a year getting all the medical community used to the fact I am going to to this and am coming home right after. It took a long time, but they are now totally on-board and supportive. It is NOT that impossible to have happen, it just takes time to adjust and get a routine going.
We are fortunate as three of our children, and their spouses, live close and came for the training .
We actually moved here last September in anticipation of this.
So 1 month from now I will be sitting behind my computer again with a trache/vent.

If I can do it, anyone can !
 

Zina Perry

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Thanks to everyone for your replies and notes of encouragement. Mike now has a staph infection in his old peg site which was removed in March. He also has a rash which they said was a yeast infection. I told them for 2 days about the site being red and they never have said that it was infected, but they started him on an antibotic and are saying it is all from yeast. He is getting flagyal? for the yeast infection. He seems to feel worse today but all days cannot be good. I passed the home inspection and I think they are planning on bringing the portable vent to the hospital on Monday and if all goes well he will be discharged the following Monday. He still has some fluid but has been sitting on the side of the bed with assistance. Again, I appreciate all of you for being here for me and I have made a list of caretakers to be trained and I also have to give the hospital a schedule of our life when we return home. Please keep me and Mike in your prayers and I know together we can do this. We have been married for 38 years and I don't plan on giving up on him.

God Bless,
Zina
 

fiddleplayer51

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Zina,
I hope all goes well for you and that Mike gets discharged as planned (July 7th?). It's been a long road since May 19th, but you've shown that you have what it takes to succeed. I'm sure Mike must feel some encouragement just being able to sit on the side of the bed with assistance.
Getting him home will be such a relief. Just being in his own surroundings should make him feel better, and not having to go to the hospital takes a real load off you. Good luck with it all. You're a real inspiration.

Joel,
I just reponded to you under the bipap question thread...Wow! All I can say is I wish you the best. It's great your children can help so much and are nearby. It's wonderful that you could move to be near them in September. With this disease you always have to try and be one step ahead so you can be ready.
It's amazing that it took a year to get the medical community in line. Good work!
Good luck in July and always,
Jane
 

brooksea

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Hope y'all keep us posted on how everything goes for each of you'ins!

Good luck!
 
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