This is a difficult topic and we don't have too much time, as the Doctors are planning to stop treatment.
My brother is good health, but was put on a ventilator, due to a chest infection, but now he cannot be 'weaned'. Everytime they try, his breathing rate (and heart rate) go up too high, to make the process reasonable.
I was looking on the internet at the 'Baclofen pump', which the Doctor felt, after reading the article, wasn't quite relevant, was unlikely to be successful.
My brother, kind of, fractured his neck, when he was just over one year old. The result of which, meant he was paralysed from the neck down. That said, he has some control over his arms, and he can write and feed himself. The Doctor has said that although Danny is 47 year old male, in otherwise good medical health, had the chest of a 10 year old child. With this, he has a rather severe scholliosis, and a reduced lung capacity. Whereas we are around 500cm3 he is around 200cm3.
There was a recent chest infection, which caused a collapse and addmission into hospital. He had to be ventilated, and the resulting infection has been cured.
Now, he can't come off the ventilator. He has been on the ventilator for 43 days, and everytime they try to remove him, his breathing and heart rate go too high, to remove him.
Does anyone have any ideas how this can be achieved?
I guess the advertising works. I used the Just answer link above, and i know its not free, but he (the Doctor online) and me believe he gave me information that he is sure they didn't try. I took the info up last night and the senior nurse took a quick look. I got an 'interesting' out of her and she said she would pass it to the Doctors. We go to see this morning to see what the Doctors say. To be honest, they might as well try the techniques, because he has nothing to lose. He dies tomorrow by 'natural causes' but painlessly. The only downside for this last attempt, is, it will bring him off the ventilator, once and for all, and he will be alive. But, there is limited time he can receive these life enhancing drugs, probably, just hours and then they have to start reducing them, and they can't go back. They will need to give him drugs to strengthen the chest and quick. If he doesn't make it, he dies, he cannot go back on the ventilator. But we all agreed, it is better to die while fighting for life than to be 'nice and comfortable' and you just slip away, because nature is 'taking its cause'. I am unliely to come back and post again, esp if he dies. So i would like to thank the online Doctor, i think he really has tried his best, and i have to agree with him, it is unlikely they tried the 'high tech solution' The high tech solution, gurantees you come off, but it doesn't gurantee you live. The Doctor online asked me twice, are there any other underlying medical issues as to why he is not coming off? I can honestly say, they have there is none that they are aware of. Second question, can they raise his vital signs to the optimum before they begin. Again the answer is Yes. The problem is simply that when they try to remove him, his breathing rate, and hence heart rate, become much too high, and this is just like torture. We simply believe the chest muscles have become too weak as a result of being on the ventilator too long, 45 days now. But they need to pump him with steriods to stimulate the chest muscles. That is just stage 1 and they have to do everything else. If nothing is done, he dies tomorrow, so really, this really is the very last chance and he & we must take it. You are welcome to ask me anything. I am sorry i cannot discuss the technical medical info, you must ask a Doctor yourself. <-- I think we all feel like this at the moment.
So here we go again...
He isn't dead yet, and it is really causing us grief the fact there is no resolution.
The latest is that they want us to help them with communication tests to see if Danny can communicate with the outside world. IF Danny cannot communicate, the Doctors are entitled to 'act in Danny's best interests', but if Danny can communicate then they need Danny to say what happens next. But in reality they are really asking him to give permission for the removal of the ventilator.
Danny passed the first test, they want to repeat the test today. He is only communicating with family memebers.
So, here are some of the ideas i have had so far
Turning off the Ventilator
Option 1 - Turn it off
For most patients, this is all you need to do, but Danny can't have this due to reduced lung capacity and weak chest
Option 2 - Gradual weaning
Unfortunately due the long time Danny has been on the ventilator his intercostal and diaphrammic muscles have deteriotated, so that when you reduce the support, his breathing rate and (and heart rate) go dangerously too high
Option 3 - Baclofen pump
They really thought this was a marvellous solution and they did ponder it and discuss it with their other colleagues, before deciding 'no'. It would have meant an operation and Danny cannot lie on his stomach and even then, they doubt any surgeon would attempt to fit it. This pump is normally designed for someone much younger.
Option 4 - Dr. Thomas MD method
i can't go into technical details, but if you are a Doctor (and can prove it) then let me know and i will provide the information
Again, the Doctors thought it has some merit, but it wasn't right. Point 1, they wouldn't use steroids here in the UK to strengthen or stimulate muscles, there is no proven benefit of them and point blank they say they won't use it. The wonder-drug the Doctor mention, they said was pretty good, but it has some serious complications. Danny could be on the drug for a short period of time, before the cells in his body begin to die. And the real point they make, is, as they start to withdraw the drug, Danny's breathing rate and heart rate would soar, because again, Danny is not breathing deep enough because the muscles in the chest have deterioated too much.
So, where do we go from here. Well... The Doctors just want to do the 'compis -mentis' tests and he fails then they turn off the life support and if he passes, they are forced to leave him on the machine unless they can get him to agree to have it turned off.
One thing i noticed, when one of the Doctors, lets call him Dr. A. When Dr. A tried to remove Danny from the machine, reducing the support, just a little bit, Danny was breathing through his nose and mouth and was 'panting like a dog', like he is 'out of breath'. After an hour, they turn it back to the assistive support and the Doctor said he couldn't make it. I said to the nurse, but why didn't we have him breathing through a mask at 60% oxygen, because the additonal oxygen is only at 23%. So apparantly, he is getting 25 breaths at say 40% and 25 breaths at 23% or whatever the atmosphere is. But if he had the mask on at 60% then it would be better. But more importantly, if you are trying to re-train his muscles to work, you cannot have him do this for an hour. He would need to do it for 10 mins and then rest for 5 mins, then do it again and again and again, gradually building up the muscles strength. His problem is, his muscles to not contract or relax fully enough to give him the support he needs anymore.
The other thing i thought about is that Danny needs and alternative supply of oxygen, that would severly reduce the lung requirement, just whilst he is being weaned off the machine. The thing i was thinking....well let me expand on it a little more
Think of someone who needs an operation on their lungs. In this case, i know the person is completely anthesiatised, but, the patient receives a completely seperate supply of oxygen, so the lungs aren't needed. OK, we could call this option 5 for Danny, but this isn't really viable, because, he would need to be sedated and it would require an operation, and this isn't happening. But the idea is there at least.
Then think of Dialysis for the kidneys. You have a machine, external to the patient that cycles the blood and purfies it and then pumps it back into the patient. And here is what we need, we need a machine that would simply oxygenate his blood as a secondary, sufficiently enough that the ventilator could be removed completely. We can't say he would survive and it would definitely bring its own complications, but at least, it would get him off the machine and we could start re-training the muscles.
I don't really know that such a device exists and if you know it does then you need to give me all the technical information quickly.
I know there is a method to remove the ventilator, i know there is a method out there, i just don't know how to search for it.
i noticed quite a few people have looked at this post. If you can find something, if you know of something then please provide the technical information. We can't use steroids and he can't have operations.
Many thanks for your giving me the time to read this thread.
The following user gives a hug of support to dangster: