6 replies to this topic

[Ricardo N.]

Hello.

I'm from Portugal and my father had a bad motorcylce accident two weeks ago (15 days). After the first couple of days in a induced coma, he regain conscience but then you were all faced with something that, until today, we never had to deal before.

He had a c2 small fracture that hit the medula and provoqued an edema. He is now paraylized from the neck down, and breaths with the help of a ventilator.

Although everyone says it is to soon to have a clear and precise prognosis, all doctors says it is probably an irreversible state.

Now, everyone in the family are trying their best to keep up the optimism and to help each other and, more important, to help my father that is still trying to understand what is his contidion right now.

I can't tell you how many questions i would like to now the answer but right now, one thing is, at least for me, particullary urgent. How can my father communicate with us since mimic is not working at all (our fault obviously). In every visit he tries to tell us something but with our incapacitty to understand him and is lack of pacience to repeat the same thing over and over is making me (sure i'm not the only one...) feel very impotent.

I believe this can be a "smaller" thing right now, but i feel that this can make a big difference in is short term recovery, and more important, is mental state.

Any ideas you can suggest?

P.S.- I know my english is not good, but i hope you can understand me.

[nomis]

I'm sorry to hear this of your father. I can't offer anything about the communication but maybe others here who have experience with ventilators can.

[adam_downunder]

when i was in acute care one patient would have someone begin reciting the alphabet and he would blink when you go the letter he needed then on to the next letter of the word etc etc.

sorry for your news, i hope days brighten up sooner rather than later.

[DaveP]

Ola Ricardo

I live in the Algarve so feel free to email me if I can help in any way - dave@player.pt

A simple and very basic system to spell out words is to divide the alphabet into 4 x rows, ie 6 letters per row and placed where everyone can see it. 1 blink means 1st row, followed by 3 blinks mean C. 2 blinks for the 2nd row of letters, and so on... Slow, but works.

Good luck!

[Ricardo N.]

Hello.

Thanks everyone for the replies and sugestions.
Actually, we have made some progress with the letter cards techique, and we also getting better in reading lips, but it is still a very frustrating task.
Because i work with computers and electronics, i'm trying to figure out some way to increment the communication problem... but is more a way for me to feel helpful...

Anyway, everything is more or less the same with him. No movement or sensation bellow the neck, very week respiratory stimulus, and some minor problems with heart beat and blood presure.
The only improvement is with the pneumonia that seems to be gone.
Is now 3 weeks from the day of the accident.

We are still in a kind of limbo. There are some bad days, and some not so bad ones. Right now we are in the process of getting all information possible from the hospital, and get some second opinion.
One thing is getting me mad since the first day, is the total incapacity of doctors in the hospital to communicate with us, and we dont have to read lips...

Again, thank you all. Reading your posts over this forum, is really helping put everything in perspective. Like i said before, i've never had to deal with this reality before, and quite honnestly, is that kind of thing that you dont even imagine that can happen with us.

Bye.
Ricardo Nogueira.

[DaveP]

Hi Ricardo

A good way to deal with Dr's etc is to try to become one of their favourites... not one of those they want to avoid. Use humour and politeness, and a big of "ego massaging" (what Portuguese Dr doesn't like his ego massaged!) Hopefully this will help improve communication.

But you must understand - they can't really give you the answers you want to hear. The exact same spinal injury can happen to 2 people and the outcomes always different. Unfortunately, only time will tell how much, if any, recovery is made - the Dr's can't tell you this as they don't know either.

For now, they must treat the broken bones and get them healed and stabilized. At the same time, treat all the other issues related to spinal injury and keep your Dad stable.

Stay strong and use humour!

[JRM09]

Ricardo N., on Jul 19 2009, 06:05 PM, said:

Hello.

Thanks everyone for the replies and sugestions.
Actually, we have made some progress with the letter cards techique, and we also getting better in reading lips, but it is still a very frustrating task.
Because i work with computers and electronics, i'm trying to figure out some way to increment the communication problem... but is more a way for me to feel helpful...

Anyway, everything is more or less the same with him. No movement or sensation bellow the neck, very week respiratory stimulus, and some minor problems with heart beat and blood presure.
The only improvement is with the pneumonia that seems to be gone.
Is now 3 weeks from the day of the accident.

We are still in a kind of limbo. There are some bad days, and some not so bad ones. Right now we are in the process of getting all information possible from the hospital, and get some second opinion.
One thing is getting me mad since the first day, is the total incapacity of doctors in the hospital to communicate with us, and we dont have to read lips...

Again, thank you all. Reading your posts over this forum, is really helping put everything in perspective. Like i said before, i've never had to deal with this reality before, and quite honnestly, is that kind of thing that you dont even imagine that can happen with us.

Bye.
Ricardo Nogueira.

Ricardo, hope your father gets better and better soon, but as a lot of people here has already said, each person is case and hard to say they will be the same.
My nephew had an accident almost three months ago, was injured at C4 level and is still using the ventilator. We hope he gets off vent soon, but still no target date for it.

I am brazilian and my family has a blog to provide updates on his progress, to extended family and friends. Since you are from Portugal, you can read the blog that is written in portuguese.
If you are interested in reading it, please send me an email (juremafl@gmail.com) and I will give you the URL for that.

Tudo de bom para o seu pai e para voces tambem da familia! E' uma situaçao bem dificil e precisarao muita força!

Um abraço.