Thre's a family meeting is set for Mon (my wife will be there - shes's an RN & 'vent' unit supvsor- different hospital- different dept) with all the different medical teams working on him. He has to tough it out for a few more days until surgical gives the OK for a 'trake'. He'll still be on the 'vent'.
The infighting still goes on with my ex (she's a RN - nursing care facility)..... His brother & sister....... & his partner.
He's kept sedated a lot and that's not good for his lungs (there's fluid).
They sit him in a chair (special) once a day to help the lungs. He still can't communicate well,. but when he does- he says he can't breathe. He's managed to get his tubes out of his mouth/throat 3 times. He's a difficult patient. He can move his arm(s) up towards his mouth & tries to take the tubes out, but he can't use his hands- but he says he can feel when we touch them (I'm not sure about that- tho).
Everything is on 'hold' and all we do is wait for the next day and what it brings.
I'm tired, both physically & emotionally.

I have just returned, and am having some car problems, and unpacking issues, etc.

But I wanted you to know I have been thinking of your son, and you and your family alot, since I was told about this tragic accident.

They will be monitoring him, O2 levels etc. If he were really in "trouble" there,
it would show. His previous experience with asthma is probably making him tense and fearful. Sedating him is probably the best way to go for now.

If he can hear you, if you explain this to him...that you are at least listening etc it might help. Feeling trapped like he must feel now is a nightmare. And very hard to understand. With the injury, there may be subjective feelings that are confusing or improperly interpreted in the brain. The intubation may be causing pain in his throat...improper intubation can damage the larynx and it is too soon to know if he is having pain there (the medical help will not want to admit to this).. I just wish sometimes that doctors/nurses could explain more completely these things to people under their care. (when I had my C-section years ago, only one nurse in about 20 over the week, was empathic enough to help me then...and my issues were nothing compared to your son's). This is one great weakness in medicine today. Caring for a spinal injury consumes the time/resources of all the helpers, and they often forget the other component.

Can you try to find someone in a spinal damage support group who could advise you? Ask around ...those people would have experienced all sorts of
things that happen during this time. (errors by medical staff, intubation pain, etc). Perhaps the social worker at that hospital could refer you to a group?

As far as your extended family and those conflicts go, that is really a tough
road. I can't begin to help with that.

I also worry that this will have a negative impact on YOU.... so you can be able to work this out, perhaps in a group setting..so you can prevent a
negative impact on YOUR PN....

Feel free to email me anytime. If you lost my email, just PM me!

Love,
mrsD

((((((Bob)))))),

That's one of the hardest things that a parent -- actually ANY sensitive human being -- has to do...is watch hospital personnel hurt their loved one. You want to just rip out all the tubes and grab him up in your arms and run out the front door with him -- don't you

Oh -- now I see more -- you've got the wife and the EX on different sides of the medical community -- you must be ready to rip your hair out.

'EX' has got to start getting these feelings out of her system. Try the blank book left in the room. You start -- put something like "I'm going to start writing down what I feel when I'm here because I want to pound in the wall the floor and the doctors." Write a few pages and leave it in the room (make sure it has a real BRIGHT cover). Hopefully, she'll start writing what she FEELS. This'll be good for both of you.

I almost want to give your son a GOLD STAR -- he's ripping out tubes even when he's in so much pain. You've got a real fighter there

I've been a step-Mom. Try to keep those two 'civilized'. The Native Americans used to use an object to pass around a room of people so each one had a chance to talk -- the one holding the feather or the arrow gets to talk. Maybe you better bring 5 pounds of feathers with you

I know you're exhausted. I know you hurt. I know you want to just curl up in a corner and scream and cry. You can do that later. Right now, focus on picturing your son walking and running again. Like MrsD says "Talk to him and explain what they're doing, explain to him that he needs to relax and let the machine fill his beautiful pink lungs with nice fresh air." Tell him to picture the air as healing energy that he's bringing into his body to heal himself. Tell him you love him and you want to see him off the machines and you will work toward making that happen; but, he HAS TO cooperate.

When you get home tonight, Bob, make yourself a nice cup of tea or cocoa and go sit out on the back steps or on the balcony or the porch or a lawn chair (whatever you've got there). Just sit and listen quietly to the sounds of nature around you. Stay calm and quiet and drink your tea and let the peace and quiet come into you.

Our steps are guided by The Universe when we pay attention and allow the messages to flow through us.

No matter how tired you are, you can do this. Just know that you, your wife, your EX -- everybody -- wants to see your son healed. Don't let any negative energy around your son. Everything that everyone is doing is coming from a place of CARING. Some people also have fear. It's OK to have fear, just don't base any decisions on it. Feel the fear, realize it comes from 'not knowing' and let it go.

Bless you all. I'm praying for your son and his entire family. HUGS (and love).

Barb

Bob, in the middle of all this madness and maheim you need to find time each day for you. The hospitals usually have a chapel and it is usually very quiet in there. Even if you are not a religious person, it is a place of peace to escape to. Even just for 15 min. When you go in there, take a deep breath and blow it out thru your mouth slowly. It will help relax you. It is extremely important to you, your wife and your son that you take care of yourself. Remember to eat, don't drink too much coffee, get plenty of water down because hospitals are very drying and dehydrating. I wish I had more to offer in this time of need that you have. But please know that you will have my prayers. I'd be glad to research anything you need me to. All you have to do is tell me what or even what you need info on.
Love,
Billye

use it as best you can.

I know you live near the water, go and feel/get the power of that water, tide in, tide out. Take your music to your son as well. I know you play well, so it's gonna be up to you to do the good stuff.

Aside from heaps of good thoughts, prayers and heaps of hope your way, I too am here for just about anything I can do long distance, and maybe short.. I'm not that far that I couldn't do it for a friend.

Be sure to take an hour at least, for yourself each day... you need to keep your charges up for however long it takes. I'm doing all the positive thinking I can muster to help it be so. - hugs 'n fuzzies! - j

Everytime I see a thread like this it brings back memories of when my hubby had his cerebral aneurysm.

Central nervous system injuries are difficult to deal with. There is the initial injury and then injuries caused by swelling and sometimes the corrective surgery needed. The doctors won't be able to tell you much until the swelling goes down and they can begin the therapy phase of his recovery. Hubby also hated the intubation. He bit his tube shut and they had to do an emergency trach. He was able to get off that after several months. They knew that he would be able to eventually but they needed the trach hole to "dry up" some before the final removal. (scary day for me...they pulled it and walked out of the room!! They had to come back and tell me to take hubby back home....I was hyperventilating at this point and they had to calm me down before we could leave.)

By the way, my hubby was 37 when he collapsed. And I take care of him at home.

Your son may be fighting the respirator not just the tube in his throat which is terribly uncomfortable. This may be where he is getting the feeling that he can't breathe. A trach will help him to feel more comfortable.

All of the advice from people here has been very good. The ones I will stress are #1. Trust your instincts, you know your son the best. You will learn to be observant without even realizing it. I can walk into hubby's room and instantly know that something is or has gone on. #2 Help the nurses and doctors to see him as a person. Tell them about him, about his interests, his likes and dislikes. What type of man he is e.g. casual, friendly, a good sportsman things like that. As soon as you can get things to decorate his room like posters or pictures of his interests. It helps the nurses and doctors to have something to talk to him about, to talk about something other than medical stuff, scary stuff. For my hubby it was (and is) Star Trek and Scifi in general amongst other things. Almost everyone knows a little about Star Trek LOL. #3. Get a portable radio or CD player so the nurses can play it for him to help him and it makes them feel good that they have something that they can do for him.

The road ahead is long and some days difficult and most day tiring. A positive attitude is a MUST and your wife must know this. But right now she isn't a nurse, she's a mom who's beloved child has been terribly hurt. She's hurt and frightened and her heart cannot hear her head. My hubby has been handicapped for 22 years and his mother still cries every day for his pain. Once she can be of use again, she will "get it more together"

Let your son know that he must give his body time to heal. Let him know that people all over the country who don't know him are praying for him(and his family too), people who do know about adversity. We live in an apartment building where you must be mobility impaired and you've never seen a livelier bunch. We have basketball players, water skiers, sailors, ping-pongers (?), and pool players to name a few.

Your support and strength will help him more than anything so be sure to take care of yourself. Rest, eat smart, find someone to talk to who can let you vent too.

It is my firm belief that God sends guardian angels to watch over people who are injured in such terrible ways. They are with my hubby 24/7/365 (I have proof). They are with your son now too.

Oh, Bob.

I'm so sorry, and hope your son suprises everyone with an exceptional recovery.

rose

Thaks Rose, "J", Mrs D .....and everyone else.
I'm copying and pasting all your advice into a file for reference.
Many of you have given me some very sound advice and ideas.
We had another scare yesterday, (I'm sure it wont' be the last)- the hospital thought that he had a P.E. (pulmonary embolism) and were going to have to put in a Green...something---("green-field" ?) filter to catch the clot.
They did a venogram and it was clear.
]On an up note, while they had him in the or & MRI & CAT, they finally put in a 'trake' last night.
When I left him they were getting ready to wheel him to the OR.
The family meeting was a bust. Nothing except finfing out that he's not cooperative and they haven't been able to get a decent neuro exam to make any evaluations. No info on degree of severity of damage without ability to do good neuro exams. Maybe now (with the tubes out) he'll be able to concentrate on something else, and give them cooperation.
I hope when I see him tonite, things'll have a different perspective.

GOOD NEWS! I've been that route w/other med issues..You, like me, have always been an at least 'cup full' as opposed to half empty person. All the tiny bits, you are sending sound hopefull, in a real and practical sense. So what? They've not been able to do the 'tests' yet? Your son has had a BIG TIME assault to his whole being!...Gobble up the good news, and heed with caution the cautious stuff.. As you well know in the development of your neuropathy and the diagnosis...lots of stuff does'nt happen rite away-no matter HOW MUCH you want it!
Maybe I'm seeing things, but it sounds like your son is a fighter! That's a good thing, and kinda like YOU. That is pure good! Focus on the good, and not the unknowns [IF I'd focused on those old unknowns w/my cancer, I'd have been a certified nutcase by now..I'm not ,I don't think, cause I didn't] Save/conserve your energies for the future, deal with the NOW minute by minute, and slog on. It's not the living nightmare it seems, as I always do, & I believe you do as well, there are surreal and absurdly funny things going on around this whole part of your life. Find them to help you get thru...
When I was in the hosp this winter [the two bum feet issue?] my roomie passed away, they moved me to another room until the family came...then after...moved me back! Um, uh, der, why? Absurd! yes, nice? no. We all go on.
I for one HAVE FAITH that things will work out better than they could.. never accept the worst, hope always for the best and sometimes good things happen.
After all, look at Chris Reeve-I was at that event when he was injured..He made lots of lemonade! We all have the courage inside us...use it wisely &

HUGE BUNCHES OF FUZZIES 'N HUGS! Keep that good heart! - j

An absurd example: We'd travelled out of state to be there for my MIL who had a very serious hip injury. Half the time to/fro/visiting [for limited times] to the hosp. Half at the motel.. Sitting, reading, looking out the window, WHAT do I see meandering thru the parking lot but COWS! Called the lobby to inform them that they have 'livestock' loose on premises...reply was: 'Yeah, they do that every so often.' HUH? Watching the 'wrestling' was a hilite of semi-urban experience and trip as a whole. Yep, cows loose was a hilite! Got it? Get it! Go for IT! - j

i'm sending a link to this thread to one of our members here. she is the nurse on the care cure forums. the link to that site was already posted on this thread, but i will post it again. it is for spinal cord injuries. it is a very active board.

http://sci.rutgers.edu/forum/index.php

there is a forum there for newly injured. it can help you get the right treatments. plus loads of info for family.

my thoughts and prayers are with your son bob and your entire family.