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staceycrawf

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i would appreciate any advice from PALS or CALS about ventilation. i have been discussing this withh my husband. i would like to trach. my daughters are 4 and 2 and i want to see them for aslong as i can. i dont want to wear a mask fulltime. i am on bi pap at night at the moment. my husband feels that if i trach i will live bedridden and dependant for longer and this will harm our children psycologically. i dont want to hurt my kids. i also dont want to leave them.he is also worried about who will care for me. the girls are a fulltime job. our famiy dont live close by. i also wonder what happens when any form of communication iis gone. what happens then. has anyone ever faced this. how will i know when it is time to let go. i am so confused and scared.

stacey 28
diagnosed 10/04 bulbar peg 10/05 bipap 10/05 walker 01/06
 

shackney

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Hang in there

Stacey --

As you work through this hard decision, you might take a look at tpals.org -- a great website that details real stories -- turning points in ALS. There are a number of stories on there that are about going to vent.

The ventilators of 2006 are amazing. The LTV 950 is a lap-top sized ventilator. You should search for it on the web and check it out.

Last -- you might read Q&As with Stephen Heywood on the ALS.net site. Stephen is on a vent full time and, like you, has a child that he was motivated to watch grow up. His perspective could be valuable.

I'm not a PALS -- but my 64 year old Dad is and he will face the trach decision as well. I can tell you that I pray that he decides to go for it. But the decision is a personal one and I would never second guess someone on it.

I always hate saying "stay positive" to my Dad every time I see him when in the back of my mind, I always think "yeah, easy for me to say." But staying positive is all you can do. One way to stay positive is to surf the web and glean information -- knowledge is at least some power, even when the subject is a scary one. Hang in there.
 

dana

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Hi Stacey,
My dad just came home with a trach/vent on Monday. Just like with anything else, there have been good days and bad days. Yesterday was a bad day. The nurse that we had did not know much about vents or trach, and dad's stuff was way too advanced for her. This made dad very anxious and nervous and made it difficult on my mom who was trying to help him out. Then you have good days where dad watches tv, gives his grandkids high fives, and kisses my mom. These are the things that I love seeing him do. We plan on taking him to the coast as soon as we can. We want to make things normal for him.

My son is 2 yeas old, and when he first saw my dad hooked up to all the tubes, he was a little scared. But, he got over it within ten minutes and was giving my dad high fives. He took charge of dad's walker and was pushing it all over the hospital. It was pretty funny. Your kids will adapt. As an adult, it is hard to see my dad hooked up to the tubes. There are times I have to go out of the room to cry because I think of what he has lost. Then I have to drag my sorry butt out of that train of thought and think about what he still has. He still has his family to share laughs and smiles with. We love him so much, and he loves us right back. That is what is important in life.

You will need help once you get to the vent/trach state. My mom is caring for my dad, and it is to big of a job for her to do alone. It is a lot of work. We have hired 4 nurses to help out for the first chunk of time so mom can adjust. We had to fire the one yesterday because she was not good for dad, and you need people who you can trust and rely on. It might be good to find some people now, before you get to the point of needing the assistance, so when the time comes to needing the help you will have some people in mind. We had to rush and find help while dad was in the hospital still, and luckily we got 3 great ladies.

When your communication gets really bad, I know they have some devices to assist you. I don't know much in this area, but I am learning. I know that there is a lazor you can use with your eyes (or something like that) for when you have lost all use of your limbs and voice. Also know that if it ever gets to the point where you cannot communicate, cannot move, and are ready to leave this world, you can have a choice in removing the ventilator. This is something I asked about while dad was in the hospital. It can be done with dignity, respect, and be a peaceful process done with the assistance of morphine. It is hard for me to think about this, but it is nice to know that if it gets to that point, dad will not have to suffer.

I am glad that dad got the ventilator/trach simply for the fact that we have added a few more memories to our list. He is a fighter, and we are going to continue to fight along side of him. I hope this helps in your decisions. Just remeber, this is your choice on what you want to do with your life. Do what is right for you. Feel free to ask me any questions any time.
Dana
 

dana

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Stacey,
I should also add that my dad's ventilator is pretty small and is portable. The entire thing only weighs 17 pounds so even I can carry it around!
Dana
 

Al

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Hi Stacey. Being on a vent does not mean you are bedridden all the time. There are small units that will work on pattery on a power chair and you are completely mobile. It is a challenge but it can be done. Explore the options. Don't give up yet. There are ways around most roadblocks.
Al.
 

stanly

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Dec 8, 2004
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trach vent

Hi,first of all i like to say hang in there as long as you can and good luck.I am on a ventilator since jan of 1999 and have never been to hospital but stayed home since,i have three children and when i first went on ventilator my youngest son was 16 yrs old and on the other two were in grade 12 and first year,i have seen them grow and go to university and spent time with them .It is very difficult for the family but when they see you positive they get the strength.take care and all the best.
 

dana

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Hey Stan,
It is good to hear that you have been on your vent since 1999, and it sounds like it has been very successful for you. Dad has been home for one week now, and the transition has had its ups and downs. I am assuming it gets easier with time. My only hope is that dad does not regret having the trach/vent procedure done. I know it has been really tough for him to give up all control to us. He has been such a trooper. It gives me such peace hearing of others who have vents and have had good experiences with them. Best of luck to you and God bless.
Dana
 

shackney

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Hang in there

Dana,

If it is not too much of an imposition, I would love to hear updates on how your Dad does and I will be cheering for him all the way. My Dad has bulbar and is likely to face the vent decision at some point in the future. I very much hope that he opts for it. If your Dad continues to adjust and improve, I am sure all of us would love to hear about it as time progresses.
 

dana

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Shackney,
I will keep you, and everyone else, posted on dad throughout this process. Like I said, there have been ups and downs, but he is getting through it. This morning was a little tough because there was a tear in the suctioning line (which is part of the trach that sucks out the gunk out of his lungs). Well, this made dad nervous and he started breathing fast. Then the vent kept showing that it had low preassure which usually means a line has come unplugged. My mom and brother could not figure out what was unpluggled for the life of them, so they finally had to call the vent people to come check things out for dad. In the mean time, they hooked him up to the spare vent, but dad was VERY anxious and his breathing was rapid. I guess I would be anxious too if the thing that was keeping me alive and breathing was acting up. But, they got things resolved and he is up and running again. This weekend was great though. Dad had lots of visitors, and he was so happy to see them all. We had kind of been keeping everyone away until we felt dad was ready or adjusted to being home, but on Sat. everyone just showed up without calling. It was actually good because dad was glad to see them, and if they would have called and asked to come, I probably would have told them to wait a couple more days. I am learning not to protect him as much. He is not a baby and he can make up his own mind on if he wants visitors. I am learning.
Dana
 
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