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jacquelyn

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Mar 11, 2006
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Hi again everyone,

My Dad was diagnosed with ALS 6 months ago. He has been on the bipap now for 2 weeks. It worked well for the first week or so but we can already see that it is becoming less and less effective. Our family doctor told us that the next step is a trach. I have discussed this with Dad but he is unable to absorb all the information and is unsure what to do (understandablely). I was just wondering if anyone had any information on this that could help us make a more informed decision....
 

Al

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Hi Jacquelyn. Sorry your dad is progressing so quickly. Try this website for some info on trach's. Not too technical and I'm sure some will give you some.
http://tpals.org/trach.htm
 

dana

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Mar 17, 2005
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Hi Jacquelyn,
My dad has a trach with a vent attached to it. His breathing was a real problem, and we had to skip the whole Bipap process because his breathing was so bad. He went straight to the trach and vent and it was a real shock to our systems at first. It is good that your are getting somewhat prepared now, because we did not do that at all and it was like we were in a dream the first couple of months. Here is what you need to be prepared for if your dad does choose to go this route...

Your dad will probably be in the hospital for a little while so he can get used to the trach/vent. My dad was in for a month. While there, my dad also got a feeding tube, but that was a piece of cake compared to the trach/vent. While at the hospital, your family and/or whoever will be helping to care for him will be learning how to take care of the trach/vent. You will learn how to clean it and what to do if it ever becomes disconnected.

You will learn how to suction your dad. This is where a little tube is put down the trach down towards the lungs. Once the tube is in the right spot, you push a button and the tube suctions the gunk that is in the lungs. This is something that people with trachs need done because saliva and phlem seems to settle rather than being swallowed like you or I would do. While being suctioned, my dad coughs and strains, but then feels much better after it is done. The whole process lasts about 15-20 seconds.

The vent that my dad has is a portable one. It weighs about 17 pounds, so it is pretty light weight. We have 2 of them (one is a back up). They run off electricity and/or battery. We only use the battery if dad goes out and the battery last for 6-8 hours. Dad is still able to shower with help. There is a trach collar that we put around his neck, that way he is able to get wet. He can't take a bath or go swimming but he can shower.

I know once my dad got the trach/vent, he felt like he was breathing again because he finally was. He got color back in his face and he gained some weight from the feeding tube. Those were the good things. Some of the bad things are that dad can never be alone now, and he has pretty much lost all of his privacy. He is still able to walk, but we got him a wheelchair to connect all of the vent equipment to, and it gives him some independence when he is in it. He does not go out too often, but we are getting him out more and more. In fact, today for Father's Day, we are taking him to the horse races. He is still living his life. It is a different life, but we try to make it fun still.

I hope this answers some of your questions. Feel free to ask me anything because we have already been through it. I am not an expert in trach/vents, but I do know a lot about them now.
Dana
 

jacquelyn

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Thank you both for your input. Dana, did the trach make your Dad's throat sore? The bipap initially made Dad's throat sore. He is concerned that he will suffer more with this then he is without this. The doctor told us that when the trach is first installed he will only use it hooked up to a ventalator when he is sleeping. Then eventually he would need it more and more. He said it would be Dad's choice when/if he chose to stop using it.

At night Dad is unable to sleep. He only sleeps for one hour intervals. He can only lie on one side and gets stiff after a while. He can't sit up for too long because his neck bothers him. We all take turns staying the night with him and Mom. When Dad gets up during the night he takes off his bipap and then needs help to get it back on.....so it is hard on Mom to do this on her own. I am just wondering if there is anything we can do to make things more comfortable in the night so he can sleep for longer periods of time. He has been taking some sort of pill to make him more relaxed and doesn't affect his breathing but it isn't working. Any suggestions would be much appreciated...
 

dana

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Dad's throat was sore from the incision where the trach was placed for a little while (maybe a week), but he never has complained of a sore throat. While at the hospital, dad was given medication to help with the pain so it made it tolerable. Before dad got the vent, he was not able to sleep much either. He was waking up about every 45 minutes and would sit straight up. Basically, he was not getting enough oxygen and this would wake him up. He sleeps pretty well through the night now. When he has trouble getting to sleep, we do have medication for that too. I'm not sure what it is, but I can find out if you want. We also have nurses that spend the night with mom and dad so my mom can get some sleep. She is his main caregiver, but a nurse comes on from about 10 pm to 8 am so mom can rest. It is a big job and mom is exausted at the end of the day. If a nurse is not able to come for some reason, then one of my brothers or myself stays the night with mom and dad. It takes a team, or a committed family, to go through this all, but we would not have it any other way.
Dana
 
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