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Robert Redmond

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Mar 20, 2010
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Loved one DX
Country
US
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FL
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Daytona Beach
My brother was moved to Arkansas after his diagnosis so my only contact with him now is through his new wife and I talk to him very little. It is very hard for him to talk so I have limited time on the phone with him. Mostly he'll say about 10 words max during our conversation.

A common thing I hear from his wife is him having a hard time breathing. She apparently thinks part of it is panic on his part and they are going to give him more pain medication to calm him down but I asked her this question-

How will you know when it is time for him to go on the trache?

Her response is that he'll tell her. He is still able to let her know.

I asked her if the doctor gave her signs to look for and she replied with the same answer, that he'll let her know when he is ready. She had said before that he wants to delay it
as much as possible.

So my question is, how will he know? I know he has lost control of body parts a bit at a time and when they go, they go. Will this happen to his diaphragm? Will it just go and will he be laying there suffocating?

Any advice on when someone should go on the trache so I can pass this on to her? I hate to think that she is sitting there thinking he is in panic mode when he is actually on the verge of losing the ability to breathe completely.

He does have an oxygen line and a machine that he uses for breathing treatment (think this is called the bipap?)
 
Hmmm, I don't think he can simply 'let her know'. His respiratory health needs to be monitored by a specialist who can advise on appropriate time to get a trache. I have heard that most have the procedure done when FVC is about 30%. Waiting too long can lead to an emergency and longer recovery period. D
 
Robert, It looks like your brother was diagnosed in March of 2010, only a few mo ago.
I assume that they have done his pulmonary function (FVC), which will serve as baseline. They will be repeating his FVC at each clinic visit, or if your brother has emerging respiratory problems then even sooner.
I agree with Dani, it's not something that your brother "will be letting his wife know".
Erica
 
I got mine when my FVC was about 30%. I was using the bipap more and more and was still tired from the work of breathing. I decided to get a trache before it became an emergency as the recovery time could be severe. So I got my trache when I was still healthy and before I got pneumonia. Recovery time was a matter of hours, it was easy and I got my life back.

Don't let him wait too long!
 
Robert,

Are you assuming that your brother has chosen to get a trache, or do you know this for fact? Not all PALS choose this route. I don't know the statistics but I think that most PALS choose instead to die when their diaphragm gives out. Unfortunately, some PALS never make a decision at all; it is an difficult topic and some refuse to go there. It is very important that every PALS becomes informed and makes a decision for themselves what to do when it's time, and not wait until it's too late to discuss it!

Discuss this with your brother and his wife. It's a very personal decison, and it's possible he's already made up his mind and is afraid to let you know. It's also possible that there's still time, and you may have influence.

-Tom
 
The last time this was discussed he made the decision to go for length of life. I remember his wife saying he was going to sign the living
will while he still could, this was around 2 months ago when he was diagnosed.
As much problems as he is having with breathing I don't understand what their delay is. I will have to talk more to her about it next time.
I think there is some fear on his part of what it will mean.
He doesn't make visits to clinics, there is a nurse that comes once a week and a doctor now and then (not sure how often but I think
he is coming out today for the morphine thing)

The responses here are about what I was thinking. I don't see how he can just wait and 'know', he needs to do it when breathing is
a problem on a daily basis imo. This is definitely something I'll be discussing more with her.
 
Something sounds fishy here. You don't use a Bipap for short periods 4 times a day and not usually with an oxygen line. If they are giving him pain medds to relax him (morphine) ? then that will suppress his breathing more. Hospice does this when the patient is near death. I don't want to alarm you but you need to get some answers here.

AL.
 
i agree with grampal
 
This sounds fishy to me as well.
Could it be she is tired of taking care of him and had made this decision on her own?
When I spoke to her today she said it was his choice to delay the vent because he is being told that in his condition when they put it
in he won't be able to eat or talk. She tells me she thinks he should have it put in but he is resisting and will let her know when he is
ready for it.
I told her the morphine worried me since that is a route that might be taken if someone chose to die naturally and not extend their life
but she insists it's only a small amount and it's for pain relief. I think the nurse is provided by hospice so that worries me as well.

My mother said on her last visit out there she thinks that 100% he wants to live and doesn't want to die. It really pains me that I can't talk to him directly and have to depend on her for info about him.
I thought the breathing treatments were a normal thing? She says about every 4 hours they put on the mask for a little bit and then take it off and put the oxygen line back on.

She also brought up the situation of what to do when he passes away. She said she has been in contact with the funeral home and making advance plans, what a time to bring this up to me?! I'm already suspicious of this situation and that surely doesn't help.
The only thing I liked that I heard was that he isn't taking anxiety medicine because it would worsen his breathing ability. I know
that sometimes they use morphine and anxiety medicine together to help someone pass more easily.

What do I do now? I'm afraid to make accusations but I am worried like hell she may have had enough. It's not like I can get my brother
on the phone alone, she has to be there to put it on speaker so I can talk to him.

Now I'm really concerned.
 
I'm going to call again tomorrow and try to get more information.
From what I remember in the hospital they would put a mask on him and there would be some kind of mist in it, I asked what that was and they said it was for breathing treatments. The mist was medicine.
Perhaps that is the breathing treatment they give him now and it's not bipap. I think I used the word bipap though and she didn't correct
me, might have even used the word herself. I will get that clarified tomorrow.
As my wife just pointed out to me it would be really odd for her family to spend 10,000 on a private plane to have him flown there only to
decide now they can't handle the situation. It's too elaborate and maybe I am just thinking the worst.
I will get this clarified a bit and post what I find out. Hopefully all is well. I asked her to ask the nurse to get his FVC number when she came out, hopefully she remembered to do that.
 
Just wanted to add that it may not be necessary to go for invasive ventillation. Here in the New York/New Jersey area we have a company, Millennium Respiratory, that suggests using non-invasive ventillation via a ventillator and nasal pillows or mask. They use techniques recommended by Dr. Bach.
A Life and Breath Decision, The University Hospital, Newark, NJ
So far it seems to work. FVC=21%.
Good luck!
 
i hope this is not the case , maybe you can call and talk to the nurse when they are thier do you know anyone at all who live near to them that would be willing to go check ..
 
It sounds like they are giving him nebuliser treatments. They are usually for asthma or COPD. I hate to say this but does he have a lot of insurance? Who's the beneficiary? Sorry but I'm the suspicious type. What kind of pain does he have that he needs morphine for. I'm no doctor but anti anxiety pills are less lethal than morphine as far as I know.

AL.
 
It all sounds very 'muddy'. I suggest you make a list of things you wish to ask and then go through it with his wife or the nurse. Can you ring when the nurse is there?

As for not being able to speak or eat on vent - from what I know this is not the case if the patient was able to speak and eat prior to vent.

It really worries me when I come across the situation where I feel the situation is presented to a patient and/or carers and family in an extremely vague manner. I would insist on knowing exactly what treatments are being given, for what reasons, what are the alternatives etc. Too often I have seen PALS just slip away, without ever being given a chance to make a choice. On the UK forum someone has been told that they can't have a PEG fitted because their breathing is too poor to have a general anaesthetic, and packed home. And yet, there are many people who have had it done with the local anaesthetic only. And there is an option of having a RIG etc. Had it not been for the forum members this person would have just accepted what they were told by the 'professionals'. Here in the UK it all comes down to the cost as well, and I know only two PALS who are on vents.

I hope you get some clarification soon, and wish your brother all the best.

Dani
 
Just wanted to add that it may not be necessary to go for invasive ventillation. Here in the New York/New Jersey area we have a company, Millennium Respiratory, that suggests using non-invasive ventillation via a ventillator and nasal pillows or mask. They use techniques recommended by Dr. Bach.
A Life and Breath Decision, The University Hospital, Newark, NJ
So far it seems to work. FVC=21%.
Good luck!

this sounds good to me untill you cant turn your neck to reach it other thoughts on this please or can it go into its own topic
 
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