28 replies to this topic

[reallynewatthis]

Hi - this is my first post to the forum. I'm doing a little research because 36 hours ago I became the spouse of a paraplegic. My marriage didn't start out that way, but a freakish fall changed everthing . . .

I don't know the exact nomenclature for his injury. All I know is that he completely shattered two vertebrae and has no feeling from about 6 inches up from his naval on down to his toes. He can breath, but his diaphragm is affected. The neurosurgeon was straight with me - we are in need a miracle territory.

I will add more info as I learn more (for example, what is the difference between 'complete' and 'incomplete'). Right now, in between trips to the ICU, I'm looking around to see what is available for information and support.

After a MedFlight to a Level II trauma center and after 5 hours of screaming in the ER while they stabilized his BP, did multiple scans and x-rays, put in a chest tube, and a central line, he was transferred to the ICU.

Today he spiked a fever and his vitals crashed. Before he lost lucidity, he consented to be intubated. That stabilized him to a certain degree - BP is still very low and pulse is very high. He does have a DNR in place if he codes. He is now completely sedated to control the pain of the soft tissue damage and broken ribs. They are doing surgery on Monday to remove bone fragments and stabilize the damaged vertabrae. Then we will see if he can live without the ventilator. So, for now, we wait . . .

Any suggestions on reading material while I wait? Any questions I should be asking? Any suggestions at all?

Just to add worry to injury, we are completely without health insurance, so I have to begin to navigate the maze of medicaid, disability, SRS, and bankruptcy. Any thoughts at all are welcome. Also, a prayer or two can't hurt.

Thank you from the noob.

Edited by reallynewatthis, 22 November 2009 - 02:04 AM.

[snowqueeneh]

All I can tell you is wait and see. Get use to hearing it. My husband was injured almost 1 year ago. He is a quadriplegic. I wanted answers but all I ever heard was wait and see. The ICU is a very scary time but he will come around. I never thought Paul would come out of that place... but he did. Just prepare yourself for when he hears what happend to him and realizes that it is permanent. I think that was the hardest part for me.

[snowqueeneh]

I also want to add that altough it is a bit early for this... life does go on. We are living a new life and finding new happiness... 11 months ago I would have never thought it was possible. Stay strong and hang on.

[davjed]

It may take time to realize it, but there is life after SCI. It won't ever be the same, but if you have patience and courage it will come. Learn as much as you can and be sure to take care of yourself as he learns to take care of himself. Don't pity or baby him, make him learn to do for himself once he gets past therapy.

[dancin' johnny]

Welcome Reallynew.

Get ready for a crash course in S.C.I. It's the condition that keeps on giving!

You are going to learn how to find positives in the darkest places, assuming that you can see through an enormous pile of negativity.

The first one is that you are here and not on some forum for the bereaved.

Posts like yours take us survivors back to the begining and allow us to reflect on how far we have come, it's early days but you and your husband will in time be looking back too.

Stand by your man, but don't flaunt it.

Best wishes for the future,

Johnny.

[greybeard]

Hi Reallynew.
Just click on the Apparelysed logo at the top of the page. Within the pages of this site you'll find all, and probably the best informed, reading matter you are ever likely to need to educate yourself about your new situation. Good luck to you both.

[gordonr]

HI,

I'm really sorry to hear about all of this, but my experience may be relevant.

I too was really beaten up with a complete break in the spine such that it took three people to turn me over: one holding the top half, one the bottom, and one in the middle to coordinate. My lung was partially collapsed. It took eighteen days in ICU before they were ready to risk a repair operation on me, so I was broken in two pieces for nearly three weeks.

Point one: ventilator. Why not? What's the problem? Whatever it takes to survive.

Point two: DNR? Why? Does the fellow have some other underlying problem? If not, I would suggest ressucitating him as often as you have to to get him through the critical phase. Life with SCI is definitely worh living. Your job now is to get to tha life. Not to give up.

point three: Insurance and money. try to get help with this. Ideally you could have somebody doing nothing but that for you, and you could just open a file in nowhere space in your mind and put all of that on hold. You have to deal with it sometime, but that time should not be now.

There is life after SCI. Just survive. That is all that is required. AFter that lots of other avenues will open up.

All of the Best,

Gordon

[MDK]

Hello Really New

Welcome & welcome !

My husband is an incomplete quad and not at any point of his 8 months hospitalization I gave up hope & that was 7 .5 years ago.
There is life after SCI and it will be what you both will make it.
Of course life won't be the same but you'll adapt and can have a very good quality of life if you both want to. Like with everything in life it will need the will to make it work.
You have already reached one of the best sites for support and we are here at any given time , just like an extended family but better because we know exactly what you are going thru.

Wishing you & family strenght ,

Mioara
www.dureahealthcenter.com

Edited by MDK, 22 November 2009 - 05:51 PM.

[reallynewatthis]

Thanks to everyone for the warm welcomes and support! It is really appreciated as we begin to navigate through this new phase in our life.

He is a bit more stable this morning, his clean-things-up-and-screw-the-rest-together surgery is now scheduled for later this week.

I cannot tell you how wonderful it is to be in a place where I can speak frankly about my worries and concerns and ask advice without having to tone my words to my audience.

The DNR was from his personal advance directive. Right now our number one concern is pneumonia, he is extremely susceptible to lung infections and already spiked a very high fever and had his lungs fill with fluid. However, the antibiotics seem to be digging in and he doing a little better.

Also, I talked to his doctor and he is a T-8. Primary concern is going to be his ability to cough and keep his lungs clear.

My name is Terri and I look forward to being able to get to know all of you for a good long time.

[allis53ca]

Reallynew, sorry you had to come find us....most will help all we can...hang in there

[allis53ca]

Gordon, no offense....but don't encourage others to ignore a DNR...

...."Point two: DNR? Why? Does the fellow have some other underlying problem? If not, I would suggest ressucitating him as often as you have to to get him through the critical phase."


the entire point of having a DNR, is to have control of what happens to us in these situations...you're encouraging others to ignore someones life wishes..not cool

[hooplady]

Hi ReallyNew,
I can relate. Oh boy can I. I remember those early crazy days when he was in ICU - luckily they seem far far away now (almost 18 months).

You've found the right place - this site has the answers to your technical questions about your husband's condition, but unfortunately you will also hear a lot of that "wait and see", "it depends" and "each injury is different." So my first tidbit of advice is to not to get too hung up on hard-and-fast answers. Right now the docs need to put him back together and stabilize him; then he will begin his journey to find out what he can do, what he can adapt to, and what help he needs.

A couple more things I can offer:
1) Most hospitals will assign a social worker who can assist with the paperwork for Medicaid, SDI/SSI, etc. It may have already begun behind the scenes; in some places that's just standard operating procedure.

2) If he is on a vent and the docs have told you he can't have anything to drink pay attention to their orders! My b/f begged for water all the time and I refused but his family gave in and almost killed him with a capful.

3) Make sure they are turning/repositioning him regularly to avoid pressure sores. He was OK while he was in the regular ICU, but as he stabilized a bit they moved him to another unit where the care was less rigorous. It took only a few days for him to develop an ulcer that took 6 months to heal. Oh how I wish I had nagged them more about how often they were turning him!

4) Find out if your state has an agency dedicated to spinal cord injuries. Although our State program has very little money to dole out, just having a caseworker who understands SCI is a great help.

5) Lastly, take care of yourself. It does no good to run yourself down. If someone offers help, take it!

Good luck. It's a long road ahead but as you can see from reading the stories here, you and your hubby can still have a very happy and satisfying life together.

-Janet

[gordonr]

reallynewatthis, on Nov 23 2009, 06:10 PM, said:

The DNR was from his personal advance directive. Right now our number one concern is pneumonia,
My name is Terri and I look forward to being able to get to know all of you for a good long time.

Hi Terri,

What I am getting at, with regards to the DNR, is that at this point, DNR is no longer an idea or a concept just "out there". Your guy is very close to death. But he has the chance to make a complete recovery (as an sci of course). So the question is: Does he want to risk that recovery, by instructing doctors to let him go, should he experience one critical moment of failure?

I ask this, because I know what I am talking about. I could have been dead. If I had let the wrong instructions I would be dead. And now, thirty years later I am very much alive.

allis53ca has responded to my post:

Quote

the entire point of having a DNR, is to have control of what happens to us in these situations...you're encouraging others to ignore someones life wishes..not cool

I do not want the patient's wishes to be ignored. But I think that if he is lucid, you should ask him to consider changing his instructions. Because, as I said, this is no longer a concept situation, this is real. As any sci can tell you, able-bodied people say all kinds of nonsense, such as, "I could never live like that!". And guess what, when it DOES happen, people DO live with it.

Similarly, "I would not want to live on a resperator!" , Why not?
Or, "If I am dying anyway I don't want them to bring me back" Oh, Yeah?

The fact is, people make these statements when they have no idea of what they are talking about. And they can easily sign off an a DNR that will needlessly cost them a long life.

So, IF he says he is ready to survive this accident, then IF we wants to be SURE he gets the chance (particularly once they get him on the operating table), THEN, he had better think NOW of putting his DNR on hold. ANd he had better do it very thourougly, because even a little paper sticker on an old medical chart on an inside page could do the dirty when the time comes.

(allis53ca: What I want is for this particular person to understand that DNR is not, in the present case, about some eventuality and his own right to choose for himself. THis is about survival RIGHT NOW. And when the case is put to them that way, it is my experience that people change their minds about DNR)

Quote

he is extremely susceptible to lung infections and already spiked a very high fever and had his lungs fill with fluid. However, the antibiotics seem to be digging in and he doing a little better.

Also, I talked to his doctor and he is a T-8. Primary concern is going to be his ability to cough and keep his lungs clear.

This is exactly the same for me, and for most of us, and it is worse with higher lesions. Many will remain ventilated throught their whole lives.

In my case, I survived the repair, and thought I was out of the woods, but nearly died about a month later from infection from my collapsed lung. Suction every fifteen minutes or so, to enable me to breath. This too, will pass. This too is something that you should ask your doctors to do EVERYTHING to get you through it, not to give them an excuse to just stand back and let you drown.

But this is just my opinion. I love life. I do not think there is a life "not worth living". A the very least, I think you should tlak to him about the possibility of getting through the NOW to the AFTERWARDS, and that that proccess may include some very agressive medicine.

Bottom line:Does he want to live?

If so, what in the dickens is doing with a DNR on his chart?

Best Regards,

Gordon

[greybeard]

This is getting scary............. but I think gordonr is right.

[goldnucs]

Terribly sorry to hear of another being added to our roles. Here's another excellent resource for you:

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

Hang in there! Believe it or not, things will get better for you.

r

Edited by goldnucs, 24 November 2009 - 03:29 PM.

[reallynewatthis]

Gordon - no offense taken at all and I totally understand everything you have said.

The doctors and I talked and modified the order somewhat. We are keeping to the spirit of the order - no extreme life support measures (those were his pre-accident wishes), but are going forward with respiratory support and treatment with ventilation and a tracheotomy.

After a lot of discussion, his docs and I have drawn a line between aggressive treatment of a specific condition, right now, his aspiration pneumonia (he has staph and e-coli in his lungs), and treatment just for the sake of treatment.

In the next room is a heart patient begging to be allowed to go and his family won't hear of it. His heart is almost completely dead. I hear the docs talking, there is no hope. However, his wife and kids aren't ready, so he has to suffer until his family accepts reality or his illness overwhelms him. They keep a crash cart in his room and use it at least twice every night.

Before his fall, my husband didn't want that. However, if he comes back to lucidity, there will be another discussion with him now that he has been through his first round of near death treatment. His wishes will be followed.

Make sense?

It's been a long ten days now . . . treading that fine line and dealing with everything from our business, to social security, to the weird noise coming from the filter on his fish tank, to getting his car back home so it wouldn't be towed, to the bad dreams. All the little stuff I depended on him for without a second thought. However, right this minute, his vitals are low, but stable, with the back surgery tentatively scheduled for tomorrow (one doc says 'yes', another 'no'). So, I can call today a good day.

I came here to hear and learn from those who've been there and done that and have the t-shirt to prove it. We may not always agree, but I am listening to everything you say and blessing you for it. Thank you.

[Tetracyclone]

good luck to yours tomorrow, terri.

[stef]

Hi everybody,
My name is Stef and I am 31 years old . 5 months ago my husband jump off a river and he broke his neck. He is a c6-c7 level incomplete.
I am so depressed there is not one day I dont think my life is over and I am so mad at him for what happened and How that happened!!
I am really depressed and I dont know what our lives will be after this.
We have a 3 year old little girl and I feel all alone in this!!
I am desperate and I dont know where to start and what to think or do!!
I just want to talk wirh someone in my same situation

[greybeard]

Stef,
Hi & welcome to the group.
You may get more response if you start your own thread rather than piggy-back this one. It helps if you ask specific questions.

[gordonr]

New,

I just want to chime in with Puff's wishes for a positive outcome. Let us know if the surgery has gone ahead or been postponed.

Good Luck,

Gordon

[snowqueeneh]

Hey,

Me again... I was reading about the noise on your fish tank and such. It just brought back so many memories of our beginning. It was so strange. I remember one time when all Pauls friends came over while he was still in the ICU. I felt so strange being around them without him. It was as though we were waiting for him to show up in his truck. Then I rememberd that he may not drive ever again, and that he will never walk into the garage again. I use to stare at all his tools everynight. It totally broke my heart. I am so crying right now.

You know... the first time they told me he was paralyzed I thought about him playing with our sons. I breaks my heart to this day. I get very upset once in awhile. But I remember people telling me that life goes on, and the dark moments become shorter and fewer in time. Well I think I'm just starting to get there now. It will be a year December 7. My Pauly is alive and as well as he can be. He still makes me laugh, he still looks damn sexy, and he still loves his family more than ever.

So it's true about life after SCI. It just takes a lot of time, ups and downs, crazy thoughts and emotions like never before, and a whole new appreciation of life. But the hard part for you right now is that there is no rushing it. Acceptance will come at it's own pace. Just hang in there and know that majority of the people you see on the blogs were on a ventilator and had collaped lungs and all kinds of infections. It's the "passage way" into the SCI life lol. Sorry, you may not laugh at that now but perhaps one day you will.

[reallynewatthis]

Thank you SnowQueen, I really appreciate it. I go into his studio which is at the top of the stairs where he fell and think how it is unlikely he will ever go in there again. I can move all of his gear and make him a new place, but it won't be the same.

I am starting to understand a bit about my new life. One one hand I am looking at our small cottage and saying "a ramp here, widen that doorway there, replace the ugly-ass vanity with a pedestal sink, and we could be in business." One the other hand the sight of one of our best friends who is a funeral director presiding over a graveside service flashes through my head. Especially on the 150-mile round trip commute to the ICU.

Puff and Gordon, surgery is still postponed. They can't get his lungs clear, he is backsliding despite the two strongest antibiotics they have to offer (levaquin and nafcillin). The nurse let me listen to his lungs. They sound like an old rattling fan that has two blades bent and a bearing about to burn out. His heart is just thudding. In contrast, putting the stethescope over my heart sounds like an air conditioner vent with a soft beat behind it. (had to do the comparison to know just how bad it is)

So, instead of back surgery, he is getting a tracheostomy and a PEG port for a feeding tube directly into his stomach. The trauma team tried to push another procedure, but his neurosurgeon vetoed it. He thinks it is too invasive for his current condition. I'll be there tomorrow by 9:00 AM to work through the maze of consent forms for the trach and PEG and then we wait and see.

Thanks to everyone who has responded to this thread with their support and advice - both are appreciated.

Terri

[gordonr]

New,

They saved me with the trach. First on the respirator and then without.

I wasn't able to breathe by myself with the trach tube that has the inflated ball to keep it from coming out. Just too much volume in my throat. They replaced it with a more streamlined one.

For a long time, I had people pushing on my ribs all the time to help me cough. The mucus came sputtering up through the trach, like a whale spouting. This was progress from the suction. But one way or another you have to get some of that mucus out.

Anyway, trach is good.

All the best,

Gordon

[hooplady]

Ugh, the trach. Yes, necessary, but it was so scary and frustating for Tom. He apparently already had a lung infection when he was shot - the gunk they pulled out of him was disgusting!! After weeks of not being able to speak, I remember the first day I walked into the ICU and he so proudly said "Hi Baby!" after practicing with the speech therapist. Yup, another tearjerker moment.

Your comments about the fish tank, and snowqueen's mention of her husband's tools - ah, the little things. I still have Tom's shoes in my living room. He used to take them off as soon as he came in the house, and always left 'em in the same place. I guess he must have worn a different pair that night. 18 months later they're still there - I can't bring them to him because he'll be reminded that he can't ever come to my house again (access is just about impossible). But I can't give them away either. Maybe soon I'll resolve this one little loose end.

Sorry, reallynew, this is your thread and I'm just going on...I guess what I wanted to say was don't be surprised by the little things that trip you up. You'll be doing fine and all of a sudden it will be fish tanks or shoes or whatever. But you'll get stronger and stronger and these little roadblocks will get fewer and farther between. You just have to spend the time and feel the feelings and learn how to cope. One problem, one surgery, one adaptation at a time.

[reallynewatthis]

hooplady - you just go on and on. The more I hear, the less alone I feel and the better I do . . .

[BRANDYgoering]

stef, on Nov 29 2009, 09:48 PM, said:

Hi everybody,
My name is Stef and I am 31 years old . 5 months ago my husband jump off a river and he broke his neck. He is a c6-c7 level incomplete.
I am so depressed there is not one day I dont think my life is over and I am so mad at him for what happened and How that happened!!
I am really depressed and I dont know what our lives will be after this.
We have a 3 year old little girl and I feel all alone in this!!
I am desperate and I dont know where to start and what to think or do!!
I just want to talk wirh someone in my same situation

[BRANDYgoering]

Stef, my heart goes out to you. I'm still learning after 8 years. Please be thankful for this fantastic site, you are lucky now. And who better to hear from than the original people. Ask, don't be shy or embarassed, jump in keep swimming and one day you be treading water. It took me 7 years to finally accept our situation. married 38 years, first 30 piece of cake after accident crap...I'm a pretty strong person (previous profession as a tax collector working with tax protestors (the worst and nastiest) let me tell you they were a piece of cake compared to the daily insurance battle, this has mentally taken me down.
A nurse told me 3 days after bringing hubby home, the only advocate he has is you. My gosh, how true. I've spent about 1 1/2 years total in the veterans hospital for sci care. we both have good insurance live in a large city but forced to vet hospital Palo Alto V A is great.

[reallynewatthis]

Hey Gang - I would like to pick your collective brains, I'll be gentle, I promise.

First, thanks again for all the kind posts and PMs, it has helped me immensely these last three weeks.

After 2 1/2 weeks, my husband had been perking up and giving a few hand squeezes and flirty smiles. However, after his surgery to stabilize his back (titanium screws/rods from T-5 to T-11 and some bone glue on L-1 to L-3), he has become completely unresponsive.

1. His arms have wasted to skin/bones and his hands have clawed up. They did an MRI to check for brain injury and/or cervical injury and all was clean.

2. He is completely unresponsive to pain above his injury.

3. His eyes will not track light. His pupils are equal and dilate, but don't move from a straightforward stare.

4. His only movements are a rhythmically shrugging his shoulders, then raising his forearms at the elbow (with his hands flopped over at the wrist), and then letting them drop like a puppet with the strings cut. He does this every 2 - 3 minutes for hours at a time.

The pneumonia is also back. They had completely dried him out for surgery, but as soon as they began nutrition and hydration, his lungs crudded up again. He is on a BiPaP ventilator with shallow spontaneous breathing.

I know my best resource is his doctors and nurses and I talk to them every day. I also know that there is a universe of real world SCI experience on this forum and I was wondering if any of you, your loved ones, or your friends in the SCI community had any insight into this new and very frightening development.

Thank you . . . .