My Son Broke His Neck -Where Do I Go for Help?

[nide44]

Hi all,
Yesterday my 33 yo son dove into the pool and hit his head.
His neck is broken at C5 and compressing the spinal cord.
I want info on treatment, surgery & recovery.
Google has too much for me to understand at this moment.
I'm upset (to put it mildly) and want some answers that the
docs just say, wait and see- then we'll know better.
I posted this over at Spinal Disorders hoping someone over there might know, too.
Anybody have any suggestions?

[moose53]

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

I'm so sorry about your son.

My ride is here -- I'm was just getting ready to leave.

I was able to find this:
Click here (http://sci.rutgers.edu/forum/showthread.php?t=3716)

It'll describe some of the 'issues' that your son might face in the near future.

You might also want to join that group so that you can email various participants.

If I were going to be here another half hour, I see if I could find more/better resources. I think this one is a good start though.

I'll check back in and see if I can help any further.

Bless you all. HUGS. Visualize the outcome that you want for you son. Do NOT panic. There are amazing therapies on the very near horizon.

Bless you.

Barbara

[Lanny42]

Hi Bob,
Sorry to hear of the misfortune that hit your family, please let the folks over at npnc know as you are a part of that family. God Bless
Lanny

[teri]

Bob
So sorry to read of your son's shocking accident.
He is in my thoughts and prayers. I truly hope he makes a good recovery.

Teri

[Fairqueen]

Dear Bob

I'm so sorry to hear about your son's accident. Hopefuly this tragic event will have a good ending. You and your familiy are in my prayers.

Jan

[Gail]

I'm so sorry to hear about your son.

A good friend of mine had the exact same thing happen, but with surgery she's fine now. Hopefully the outcome will be the same for your son. The surgery was done through the front of her neck and I believe they fused it. It's been a while so I could be wrong, but I do know that it turned out fine.

You and your family are in my prayers.

Gail

[dahlek]

with you and that of your son.

I hope and am sure that he is in good care.

Anything I can do, just ask! Please. - j

[MelodyL]

Bob:

What can I say? I'm a mom too!!!!

You must be in shock!!!

Everybody said what I was going to say!!

Just keep positive thoughts around him.

Sending lots of good energy your way.

Love, Melody

[nide44]

Thanks to all of you for your help.
My son has had a 'burst' compression fracture at C5 with (possible/probable) damage upward and down ward to C4 & C6. His surgeon said that he is classified as a 'quad', but he has movement in his upper arms to elbows and gross feeling in his hands. He was operated on yesterday to relieve the compression/decompress (anterior?) and may need a (posterior) operation today or tomorrow.
He is intibated (sp?) and will tbe 'trached'(sp?) in about 5 days. H'll be on a 'vent'.
They don't know if he can breathe on his own, yet- too soon to tell. He is agitated and moves his head when they bring him out of sedation- so they're keeping him sedated as much as possible. Its only the first 48 hrs at this time and too soon to tell about anything.
I thank you for your prayers and accept them gratefully.
I think he needs all the help he can get.

[dahlek]

eyes bulging, gasping for air, flopping around and totally powerless to DO ANYTHING BUT HOPE!!!!! You and your family are not far from my thoughts and heart for the duration.

PM me, 'e' me... anything that I can do long distance...I will. - fuzzies? - j

[jccgf]

MrsD is away for the summer, but heard about this and asked me to post this message from her. I am also very sorry to hear of this tragic accident, and will pray for the best possible outcome for your son. Cara


From MrsD:

I'm so sorry, Bob, that this has happened to your son. At this point, medically, you will have to listen to the doctors and take their advice. Patience and strength are the two things that will help him the most at this point. I will be returning after this weekend. Please email me.

MrsD

[moose53]

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

We all are praying for your family and for your son. All of us in the Child Neuro forum KNOW that prayer works and miracles happen. We've all seen it.

Your son is probably agitated when they try to reduce the sedation because that type of fracture is supposed to be very painful.

You've got to be taking care of yourself now so that you can be there for your son when he needs you. Make sure you get as much sleep as you can and eat properly. Stay away from the internet -- it'll just freak you out. Choose one of the doctors that you feel comfortable with and try to develop a "friendship" and a rapport so that he/she understands that you want to KNOW everything and LEARN everything and UNDERSTAND everything.

Try to get your hands on a copy of this book: "The Therapeutic Touch: How to Use Your Hands to Help or to Heal" by Dolores Krieger. I used it when my Mom was dying from colon cancer -- it relieved her pain incredibly. I've also used this technique on other family members. This book is truly amazing -- a gift from God.

http://img.photobucket.com/albums/v90/moose53/GIFS/comforting-hand.jpg

Hang on tight to all of us, Bob, and BREATHE. There are people that have come back from severe injuries. And, there are also people that live incredible, fulfilling lives in spite of severe injuries.

Bless you all.

Barbara

[Silverlady]

Bob,
I can't express how sorry I am.

Last Summer we had a family event I didn't post about. My 12 year old grandson suffered severe brain damage from a clump of arteries in his brain that ruptured. After brain surgery he then suffered a stroke. He was in very severe shape. We didn't expect him to live. Four surgeries later, he is home and walking. He has a long way to go, but it can happen. The youth of your son is in his favor. Take care of yourself.
Thinking of you,
Billye

[glenntaj]

--as I've been busy with SAT/ACT season and haven't been on here much, but I can only add my good hopes and wishes for your son's recovery.

Sadly, this is just the type of situation which highlights how bad it is that Braintalk has been down for so long; while we do have the Spinal forum here, it does not (yet) have the depth of database or variety of experts that could well be helpful . . .

Let's hope that time will be on his side in this.

[LizaJane]

Oh God, Bob, I am so sorry, beyond sorry, to hear this. I know that a broken neck doesn't necessarily mean he's paralyzed, and hope that is the case. Christopher Reeves did show how much can be done, and that there is help and recovery possible from even the worst scenarios, given good care. I believe that the jist of what was learned through him is that almost all the paralysis is due to dis-use and atrophy, and that the most important thing to do is to keep passively moving the body so that circuits remain active. But the details are beyond me. There are special centers for spinal cord injury:

http://www.sci-info-pages.com/rehabs.html

But if this were my son and I was looking for information, I'd trust Christopher Reeves' website/foundation above all other information:

http://www.paralysis.org/site/c.erJMJUOxFmH/b.1169107/k.BE3A/Home.htm

Just be there for him at this point, and you are doing the most important job a parent can do.

LizaJane

[DanP]

Bob B - wishing your son the very best and please know your entire family will be in my prayers.

[nide44]

Update- no update.
He's being kept sedated due to the panic and fear that makes him thrash his head and shrug his shoulders. He's asthmatic, was extremely so as a child. He keeps mouthing he can't breathe and is gulping and gaspig with the intibation down his throat. Its hard to watch and looks like a dying man gasping his last breaths.
My ex (his mom) keeps ranting that it might have been better off he'd not survived the accident, and she wishes she could change places with him- over and over and over.......She has his sister thinking the same.
His older brother and I are trying to keep it together.
I've called for a Family meeting with the docs.
I'm tired of getting everything 2nd hand. Haven't spoken to his docs since Mon nite (surgeon assisting on 1st surgery). I've never seen, or spoken to his main surgeon- the head of the dept, and a world known leader in SCI surgery.
The place is very confusing with different teams doing different things. Hope the meeting will be early next week.

[jccgf]

I've had my fair share of hospital experiences with my parent's hospitalizations, and it can certainly be difficult to get information.

I'm glad there will be a meeting. You can also let the nurse assigned to your son know that you'd like to speak with the doctor, and often they can give you a general idea what time the doctors might be in, or they can call you when they do get in. My sister and I sometimes camped out at the hospital for hours, just waiting for five minutes with the doctor. Or, you can leave a phone number and request that the doctor call you at the time s/he is looking in on your son. We've had decent luck getting doctors to talk with us, but one thing is for sure~ they don't normally go looking for you. You do have to initiate and orchestrate the communication.

Is your son single? Just wondering how many family members are involved. This can also complicate the communication process, and it might be best to choose one person to do the majority of the communicating... which might be difficult in your circumstance depending upon your relationship with your ex. In my family, it's easy...we pick my sister who is a nurse. If you don't feel your are getting adequate information, you certainly deserve to be able get information first hand from the doctors.

The scene you describe is heart wrenching.

I hope the doctors are aware of his asthma? I don't know if his gasping and gulping reaction is common just due to the intubation, etc, or if the asthma might be a factor that his doctors haven't picked up. It is critical that family members are there to fill in the pieces. When my husband was hospitalized after a surgery, it was ME not the nurses, who noticed his decreased respiration rate. He was loo-loo from low oxygen, and they just kept giving him more oxygen, never questioning WHY his oxygen level dropped every time they took off the mask. Well, his respiration rate had dropped way low due to too much morphine. Once I called attention to the fact that he was taking one breath to every 3-4 of mine, they realized it was the morphine and immediately discontinued it. WIthin a couple hours he wasn't loo-loo, and he was breathing normally without the extra oxygen.

The point is... don't underestimate your instincts or hesitate to ask questions and let the nurses/ doctors know about anything you feel may be wrong or are worried about.

My thoughts are with you and your family.

Cara

[dahlek]

but, I wish I could hold your hand every step of the way. Just to hold it and share/give what strength I have to YOU. It'd be a very small sacrifice for a good person.

Thanks for the update...I've been hoping that no news is better news and that there are tests, tests and more tests going on for the good future.

I don't know about anyone else, but OF COURSE I'd be UPSET upon waking up in a hospital w/a tube in my mouth when [what seems minutes ago] I was having FUN in a pool....It 's just that he hasnt' had a chance to catch up on what has happened & may not want to, but who would blame anyone that anxiety? Tell him over and over what's GOING ON -drugs and damage may block it or keep it from registering. As we all know from our adventures in PN diagnoses, it's a bad trip. This one is worse.. Info, can help. Clear info on what is now and what's doing NOW.

IS he at Hopkins? IN the meantime, HEAPS of good thoughts for good things your way. It's hard to do much else - My heart and mind are with you/for you forever how long! - j Hugs 'n heaps of fuzzies!

[moose53]

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

I didn't realize you were divorced -- that's makes it hard -- for both you and your EX. This is a time now when everybody that has any contact with your son AT ALL has to be on the same page.

Saying "He'd be better off dead" or "I wish it were me" is not helping at all. I understand the emotion behind those words -- I'm a Mother. But, you all have got to work together. Sick/injured people can feel negative energy. You guys need to try to project a postitive energy. Your son is still alive -- Thanks Be to G-d -- this is truly something to be thankful for.

G-d forbid that your son is permanently, severely disabled by this -- BUT, if he is -- he doesn't need anyone devaluing his life. Look at Steve Hawkings. He doesn't move or talk and yet he's had a magnificent life. Not just in his head. I even understand that he has no trouble finding 'partners' ( ;) ).

Your son was an incredible, amazing, one-of-a-kind human being before the accident. He'll be the same when he's able to get past the pain.

Dahlek is right -- it takes a while for your head and your body to catch up with each other after a major injury. You, yourself, must know that if you've ever broken a bone, your body has a heck of a time adjusting to doing things differently. But, it does adjust.

I've got some advice for you. I worked for a year as a home health aide. I was a full-time aide for the local visiting nurses' association. I had 25 patients that I rotated through over a two-week period. Most were cancer patients. Some were elderly stroke victims.

The most incredible example I have ever seen of a family coming together was the family of a 94 year old man with stomach cancer. Thanks Be to G-D, he had no pain. He had me coming every day to help him bathe and dress and change his bed. He had a homemaker who prepared his meals and cleaned his house. Now this is the BEST PART: There was a big calendar on the refrigerator. Every single family member -- from children to grand-children to great-grand-children had a task on that calendar. Someone took him to the barber. Someone else took him to the doctor for his checkups. Someone bought the meat. Someone bought bread. Someone bought household supplies -- like toilet paper, paper towels, cleaning supplies. Some of the younger ones just visited him.

No one got burnt out. No one felt left out. No one had to spend too much time and too much money. Everyone got to feel useful. And, best of all, that dear old man had family every single day of the week. Not like the "have to" visits that some people make to the hospital or to a home-bound, terminally ill person. Everybody was there because they WANTED TO BE.

You've got relatives. I don't know if you and your EX have re-married. If you have, you've got spouses that can participate in this.

Order that book about "Therapeutic Touch" from Amazon.com or borrow it from the local library. (If you send me your address, I can mail the book to you.) Have everyone that has any contact with your son learn how to do The Touch. It will calm him and stop him from thrashing about. The only requirement is that you have to feel calm inside yourself when you're working with him.

It sounds like the trache is reminding him of when he was younger and had trouble getting a full breath. That, to me, sounds like he's trying to breathe. Have they discussed removing the trache yet??

This is another thing that you might want to think about. Since there's EXs involved and you're both trying to catch the doctor to ask questions -- how about if you come up with a simple little form for your own use on a clipboard -- have things like heart-rate and pulse and stuff like placed on it but, also have the nursing staff make comments like 'he slept well', etc. At the bottom leave a place for your and your boy's Mother to ask any questions that you have. FORCE everyone on the hospital staff to use this to communicate with you guys (including the doctors). Have a notebook. Leave it in the room. Make your EX aware that it's there too. You guys have got to learn to work together.

It would be easier if you could just read the records. But, records are too technical and you can't write on them yourselves.

You and your boy's Mother could turn this notebook into a sort of diary of his recuperation. If you have any thoughts about how this makes you feel, write it down. Sharing your feelings on the same paper that Mom writes on will help you guys work together. Eventually, the notebook can be copied so that the other parent has a complete copy.

I found that when I was going through my divorce, it was much easier for he and I to communicate in writing. Instead of being a two-way communication between you two, this is going to be three-plus way of communication. You guys with the doctor And the nursing staff with you guys.

Talk, too, with the nursing staff and the orderlies and the doctors. Everyone. Everyone that begins to see you and the boy's Mom as feeling, caring people will help to get better treatment for your son.

Talk with your son. Read to him. Get some CDs that relax one and play them for your boy. Again, go to amazon.com and look up "brainwave symphony" -- you want these two: Brainwave Symphony: Delta and Brainwave Symphony: Unwind & Sleep. Other companies make similar ones, but, I have experience with these.

I'm still praying for your son and for you and your boy's Mom and sister. You're all in my heart, too, Bob.

Let me know if you want me to mail that book to you.

Bless you all. HUGS

Barb http://chocolate-moose.p5.org.uk/MINIS/friends2.gif

[nide44]

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.

[mrsD]

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

[moose53]

((((((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 http://chocolate-moose.p5.org.uk/MINIS/thumbsup.gif

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 :p

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

[Silverlady]

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

[dahlek]

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

[trekker]

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.

[rose]

Oh, Bob.

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

rose

[nide44]

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.

[dahlek]

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 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

[Curious]

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.

[moose53]

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

I was just checking to see how you guys are doing.

Thanks G-d there was no blood clot. Certainly don't want that.

Your son sounds like a 'feisty' *IM*patient ;) My Mom was like that. My Mom went after the nurse with a knife -- sure hope your son isn't as bad as my Mom. Some people just cannot take being hospitalized.

I'm hoping that you see more cooperation as he gets used to being there and gets to know the people that are working with him.

I'm like Dahlek -- I take in the 'good news' as *GOOD NEWS* and the 'bad news' as bad news.

I hope when he sleeps and when he dreams, he can feel all the love and support and caring and prayers that are coming his way. Me and all the Moms and Dads in the Child Neuro forum have seen miracles. I hope your son gets his miracle (hope you get yours too).

Bless you all. And hugs.

Barb http://chocolate-moose.p5.org.uk/MINIS/knuddel.gif

[nide44]

i'm sending a link to this thread
http://sci.rutgers.edu/forum/index.php
there is a forum there for newly injured. ...................
.......my thoughts and prayers are with your son bob and your entire family.

GOT IT & signed up!
Thanks-Curious & Barb
(You too, Dahlek!)

[Curious]

(((((bob)))))

yw

<-----hands bob a brownie

[Chemar]

Hi Bob
I just learned about this and wanted to give you a ((hug)) too and let you know I am keeping your son and you in my thoughts and prayers.
Cheri

[JoJo6]

Hi Bob
I just learned about this and wanted to give you a ((hug)) too and let you know I am keeping your son and you in my thoughts and prayers.
Cheri

ditto what Chemar. Bob, know we are here for you so just hang on ((((Bob & son)))) Jo

[nide44]

Firstly, I'd like to thank you all.
I'm grateful for your thoughts and prayers.
He's still in CCU critical care. A portion of his lung collapsed
yesterday they had to do a Bronchioscopy and put in a different 'trake'.
He'd been fighting and complaining he couldn't breathe- gasping for breath when the respirator was doing 100% of the work.
He seemed to be resting a bit more comfortably with the new 'trake' when I saw him last nite.
I haven't communicated with him since last Fri.
He's been sedated and on pain meds- and 'out of it', or sleeping.
He's still not stabilized.....he's still critical.

[Curious]

((((((bob & son)))))))

y'all are in my thoughts and prayers.

[moose53]

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

I'm glad you son seems to be resting more comfortably. Sleep is probably the best thing for him right now -- it'll help him to heal.

You're all -- ALL of you -- in my heart and still in my prayers.

Bob, even if your son's not awake enough to communicate with, if you just caress his forehead, he'll know you're there. Sometimes touch communicates more than words.

Bless you all.

Barb

[janster]

Bob~
I'm so sorry to hear about your son. My thoughts and prayers
are with you and your family at this trying time! Take good care!

http://i41.photobucket.com/albums/e274/janster46/Pray/img74.gif
Hugs,
Jan

[DanP]

Just hang in there Bob B. There are hundreds - maybe even thousands of PNers alone praying for you and your family. Another benefit of belonging to these sites. Stay brave....stay strong.

[dahlek]

Keeping on!

In between YOU better be sure to get some rest to recharge yourself. It'll help you keep it all together when stuff tries to pull you apart.

Thanks for the updates, as you can tell-we're all trying to pull for you/with you as best we can.

Heaps of comforting fuzzies your way for you and your son. - j

[trekker]

Dear Bob,

Keeping you and your family in our thoughts and prayers.

[jccgf]

Dear Bob,

My thoughts and prayers remain with you and your family.

Cara

[mrsD]

I haven't heard from you so I assume everything is in a "hold" pattern.

These injuries are extreme... and time is a very critical issue with them.

I hope you are taking care of yourself, and your PN is not worse
as a result. Everyone here has offered really great suggestions.

But each case is unique... and you should consider everyone's suggestions.

I think of you and your son often, and truly hope this resolves in a positive way.

Don't hesitate to email me.

Love,

[nide44]

I haven't heard from you ...........
I hope you are taking care of yourself, and your PN is not worse
as a result.
I think of you and your son often, and truly hope this resolves in a positive way.
Don't hesitate to email me. Love,
I'm sorry, I'm forgetful under these circumstances- I sent you an email today.
My meds are not working too well, guess I'm overriding them with stress.
Emailed my doc. She wasn't concerned about the meds, just how I was doing and how my son was. Everytime the meds don't work and I've got the old PN pains back, I just think of what my son is going thru- and I just 'tough it out'. My pains are but a trifle compared to him. At least I can walk and breathe on my own. My prayers aren't for anything other than to let him breathe on his own.
After that- then we can look at his recovery. My thoughts can't go farther into the future than to let him breathe without a machine. That's as far as I can think ahead, right now.
He has recovered movement in both arms- but not hands or wrists, yet.
No leg movement at all, at this time.

[dahlek]

His body has been hit by the equivalent of a Mack Truck! It will take time but I've been sending a big heap of good thoughts your way.

Do make a point of taking a minute or few for yourself, you need to keep yourself glued together for all the future steps.

I've a good technique for measuring your tension...get a bottle of bubbles for blowing- you cannot do it when you're too tense. It makes you think about relaxing and you'll be surprised at once you can blow those old bubbles, how much better you'll feel.

Heaps of hugs and fuzzies too! - j

[nide44]

Update on Adam.
Thanks to all who've sent kind thoughts and prayers
After more than 3 weeks, he's been moved to another room-
a step-down from Critical care, to Intensive care.
He's starting to breathe CPAP
and with the vent turned off and a 'trake' collar on, for about 4 hours a day.
At least its a move in the right direction, but he's still needs ICU care.
He has more movement of his arms and can wave hello & goodbye.
No hand or wrist movement and no function below the diaphragm,(yet !!)
We're still praying that he will get off the 'trake' and
be able to breathe on his own.

[jccgf]

I'm so happy to hear some positive news!

~ my thoughts and prayers are still with you.

Cara

[Silverlady]

Bob,
This is a situation where I (and maybe others) don't know what to say. I want to comfort you and really don't have the words. I know my grandson's recovery has been baby steps, but he IS recovering. I pray that this will be the case for your son. I just send my best. Not much, but it is my best.
Love to you and your family,
Billye

[mrsD]

I'll keep sending good vibes your way and his way too.

Each small step is in reality a "huge" one!

[moose53]

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

Thanks be to G-d, there IS improvement.

Waving, huh??!! That is "fantastic" :D

Bless you all, Bob. I pray that your son is given the gift of complete healing.

You -- you, take of yourself. Make sure you eat properly and get some rest, even if you can't sleep.

BIG HUGS (and love).

Barb

[nide44]

Adam has been transferred from the Shock Trauma center to a rehab hospital.He's not out of the woods, yet- still in ICU at the rehab hospital, but he has been breathing on his own with a'trache collar' for 4-8 hour periods. There shouldn't be any more tansfers or problems dealing with where he should go. He's finally at the rehab center where he'll undergo a program to determine what, and how much, function he can regain.
We still pray that he'll wean off the respirator/'vent' successfully, and finally breathe on his own- completely.
Bob B

[moose53]

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

http://chocolate-moose.p5.org.uk/MINIS/11_5_14.gif

We've got him stabilized and breathing good.

Now we've all got to focus on the next miracle -- breathing without the trache.

When we think of Adam or pray for him, we've all got to picture him breathing WELL without the trache.

I wish we were all closer so we could do more FOR YOU. Home-cooking. Housecleaning. Shoe-shining. Making sure you eat and sleep.

You'll have to take over the responsibility for all that and make sure the last two (eating and sleeping) get done WELL.

You and Adam and your entire family are in our hearts and in our prayers, Bob. We'd all do more if we could. All of us who hang around the child neuro forum have seen miracles. I want that for you and for Adam.

Bless you all. BIG HUGS. And love.

Barb

[janster]

Hang in there Bob! You're going through so much right now, and as everyone has pointed out: don't forget about you! Take care of you too! (((Bob))) We care.
Hugs,
Jan

[dahlek]

It CAN happen! And, I believe will continue.


For you tho...Go now, to your nearest Wally-world and get the newest DUCT TAPE - It now comes in socially accpetable 'decorator NEON colors'!

Adam may not need it, but, I'm guessing that you DO!

Heaps of fuzzies! - j

[Silverlady]

Bob,
I check this site everyday and sometimes more than once a day hoping for good news from you. I remember when my grandson was in a coma last year, everyday brought something new. Little bitty steps but they were steps! There is so much medical knowledge out there now about this problem since Christopher Reeves brought it to the forefront. It seems you are in the right place for the miracles to occur. I know you are probably eating, sleeping and breathing hospital right now, but remember, he will need you badly. So take good care of yourself, eat right, rest and sleep, take meds on time and the supplements. I wish I could be there to help in some way, heck as Barb says, we all wish we could help. Just know our thoughts and prayers are there.
Love,
Billye

[rfinney]

Bob,

I have been away for awhile and I am stunned to read the news about your son. I will hold a thought for his recovery and for your own well-being during this most difficult time.

I think nothing is as trying and wrenching as when something befalls one of our kids. I am so glad you have all the support here that you need. I think you know that you could ask for most anything of us here and we would gladly help. And I hope you do let us help - it is too easy to not ask so please don't fall into that one.

Of course, there is much that only others can do - and I hope that you will also make use of friends and relatives as well. Since you are not in this alone, there really is no need to act or pretend that you are.

May all the good docs, nurses, etc., etc. be with your son,

rfinney

[nide44]

Thanks, everyone-
Arrrgghh!!
Chicken Soup !!
I woke up this morning with the worrst chest congestion
and scratchy throat, & cough- and had chills and fever, and sweats last nite.
Must've picked up a bug spending 4 hours a day for 28 days in that Shock Trauma hospital.
] I'll push fluids B12 and 'C'.
I have a grandkid's birthday party to go to today &
feel like I oughta stay in bed.........oh well....!

[Aussie99]

I'm a little late arriving, I saw the thread but I was afraid to read it,and I also didn't know it was from you. It just didn't click because so many members are still missing on this new forum.

I just wanted to say that I am also a mum, and felt so very sad reading the post. I hope you know that there are many prayers coming to Adam and you all the way from the other side of the planet. You will be in my thoughts and prayers everyday.

[nide44]

Some of the prayers must be getting through.
They fitted Adam with a new trache and a 'talking' valve.
He now can talk and finally communicate well.
It takes some of the frustrations out of the picture.
But someone has to put the cap on the valve to make it happen, and some of his nurses either forget or are too busy.(we've gotta get that straightened out)
He's to get to try to use a motorized wheelchair (with a joystick) in a few days, too.
Also, the doc said he might be able to have his trache removed, completely- in about 2 weeks. He's breathing much better.

[mrsD]

It sounds like improvements coming as healing takes place.

How are you doing with that cold?

I for one will keep up the prayers for Adam.

[Silverlady]

This is wonderful news! I know it's baby steps but he will get there. It just takes time. Hope you are feeling better. Better step up your zinc for the winter season. I'm still praying.
Love,
Billye

[HeyJoe]

Im glad to hear that things are moving in the right direction....we'll keep the prayers coming

[Aussie99]

I hope Adam continues to recover and heal. This is very good news! Bob, time and patience can heal so much. I will continue to pray for Adam and keep him in my thoughts. Thank you for sharing this news.

Hang in there Bob, and remember we are here for you.

[dahlek]

hear some good news in this world today! ESPECIALLY YOURS!

Good thoughts and heart your way always --for all of you and yours! - j

[Brian]

My god, i didn't know this terrible accident had happened, my very best wishes for your son's recovery.
take care Bob.

[moose53]

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

I was just thinking of you and Adam today. Wondering how you'all are doing.

Just wanted to let you know that you guys are still in my heart and in my prayers.

Hugs (and love; and blessings).

Barb

[Silverlady]

We need an update. How is he and you doing?

Billye

[jccgf]

I keep an eye on this thread, too, in case there are any updates.

Bob, my thoughts and prayers remain with Adam and your family.

Take care,

Cara

[glenntaj]

--on the Neuropathy Association boards at www.neuropathy.org.

His son is still improving, bit by bit, which is good to hear.

I'm sure he'll get around to posting about it here.

[nide44]

Sorry I haven't gotten back sooner, but am just getting around to posting here.
Adam seems to be getting much stronger in his respiration and is doing well (I hope) in OT & PT.
He does have a a stage 1 (beginning) pressure/tear sore on his coccyx and a pressure sore on his heel. This worries me a lot (and my wife as well-she's a nurse RN manager for a long-term ''vent" unit at another hospital, and fights pressure sores on her unit, daily)
We worry a lot. We have to be extremely vigilant, more so than the hospital staff.
They make mistakes, and do not seem to be as concerned as we are about his immediate wants & needs. There have been so may daily mistakes, I wonder how patients survive if they don't have as vigilant and experienced a family to watch over them. Listing them would be a laundry list of bumbles and "Mack & Meyer For Hire" episodes. They would be funny if they weren't so threatening to his well being.

One example was a Nigerian Aide who answered the call button (we had never seen her before) to get him from the wheelchair into the bed. She bent over to him and asked him to bend forward to her (he has no upper trunk mobility) he said he couldn't (I'm watching this in horror) so she proceeds to try to lift him by his armpits (NO! He has a neck injury) and we all tell her she can' do that. Se looks at us as if she's not about to take orders from relatives, and proceeds to try under the arms again. We say she has to lift him at the waist. Vacant look in her eyes. I stop the fiasco and tell her (demand) to go get someone who knows how to do it. This is supposed to be a top notch Spinal Cord Injury ward !! She was clueless.
Adam had had the same thing happen about 3 weeks ago, but we weren't around and when the aide lifted him he felt something 'pop' in his neck.....off to CAT Scan & x-ray to make sure his neck screws & plates hadn't been pulled out of place.

He has had the trache removed just a few days ago & has been breathing on his own for a while now. He also had his 'peg' for feeding tubes removed as he's eating all solid foods now.
He'll be released after about 3-4 mos of hospitalization & in-patient therapy. He'll probably go home before the 1st of the new year. (his sister has had a contractor in - she's gotta build ramps, widen doorways, modify the bathroom, etc)
We won't know what functions he can regain until he's had all his therapy.
He has moved one finger and one toe- a little. He has squeezed his knees towards one another about 2 inches with extreme effort. He can get his hands up to his face to scratch an itch (he wears arm/wrist/hand braces) , but it is very uncontrolled arm movement- not wrist or hand movement.
I'm told these are milestones and wonderful accomplishments for a C-5 compression fracture.
It is very saddening and difficult to be impressed with so little, but we must be 'up' about his accomplishments. Attitude plays a huge part in his recovery.

[mrsD]

I sure know about uncaring poorly trained staff. You don't want to know
what I see at the nursing home provider I temp at! If ANYTHING would
make people understand preventive medicine, my job would! Sometimes I get
very depressed, so it is hard to block out certain things. (like when I did midnights and had to answer staff phone questions at 3am---oh, you wouldn't want to know how awful that was!)

This is great he is getting movement back. But therapy is a LONG haul, it will take much longer I suspect than they project. So be prepared for that, so discouragement does not dampen his progress!

He is very lucky to have family there to advocate for him. Everyone in a hospital really should have this. That is just sadly how it is now. Things are sooooo
complicated, and communication poor, and the horrible nursing shortage!

Thanks for the update, Bob... I've been thinking of you all every day!;)

[Silverlady]

Hi Bob,
It is so good to hear from you. I was worrying. I checked this thread everytime I logged on. He's making progress, that is what you have to remember. It may only be a little...but it is progress.

You take care of yourself.

Billye

[dahlek]

"Inch by inch, row by row....grow" - Isn't that way with nerve damage and how things heal? For you and for Adam, the scale is just a different one...

Moving A finger or A toe ARE milestones! Given all you'd indicated, well, we all want to HOPE but, it IS truly worth doing! People can and do defy odds, IF and I believe Adam is...made of some of the same stubborn stuff you are of, well...think of it this way...THE ONLY WAY IS UP!! To think less, is well, simply unacceptable!

Am I getting stuff rite? That Adam's Sis is remodeling to accomodate his needs? WOWSERS! Hug her really BIG-time for me! Any adventures in that quarter would be appreciated, as I'm trying to plan ahead..sort of? Keep in mind that every single day is fraught with frustrations, which can be turned around into adventures and progress and hope. Your spry sense of humor could put all of this into a well, interesting light?

I believe that how hospital staff, docs and whoever should deserve a separate thread under something such as medical ethics...a usually under used corner of the world, but, such experiences as yours will probably be 'echo'ed' or 'enhanced' by other tales. None of which are productive other than the sensitising of ALL as to the P&P's of various facilities...I'm thinking that they are becoming more consumer conscious of us patients and families of same...I'm sure we've all horror tales to tell ...what an apt time to do it! PBS has been doing a series on how hospitals are averting potential 'disasters' and involving patients and families in changing the 'systems' -aspects that appear to be entrenched.

Have you talked to the 'Hospital Patient Advocate' about that particular staffer's care? Mind you...such adovates tend [duh] to preserve a semblance of HOSPITAL INTEGRITY thru it all. BUt, names, dates and a comparison of witnessed action/adverse to instructions could get things Hopping? I sure hope so!

As you've always advocated, "Every Day is a NEW day, with new things to DO!"

I realize that you've about a million things to catch up on in your own life, and are thinking on how many more million things you will have to do to adjust to a heap of changes in your current and future life... But don't let your friends not do whatever we can to help you...even tho it mite be remote. We are here, want to know, care and help if'n we can.

Heaps of fuzzies [hypo-allergenic, of course] to you and your son! - j

[nide44]

........I believe Adam is...made of some of the same stubborn stuff you are.......

I prefer to call it just 'dogged determination..
and yes, he's a real SOB when he wants to be.......
not what you'd call a ''model' patient. I think damned difficult is more like it.:rolleyes:

My concern is that I know for a fact, that difficult and bothersome patients and families are 'given the shaft' and moved off the unit or released with quick dispatch. :( (My wife does the same thing on her long term care unit)

Altho he's having a difficult time, he needs the OT & PT-
as much as he can get, for as long as he can get it.
I don't want him released too quickly (he'd rather be home, but there is where he'll get the recouping skills)

Am I getting stuff rite? That Adam's Sis is remodeling to accommodate his needs? Your ..... sense of humor could put all of this into a well, interesting light?


Yup, she and her husband re-mortgaged to be able to afford it........:o

I think I write a book when all is said and done.
Guaranteed sale of at least 25 copies.(immediate family and grandkids :cool: )

Have you talked to the 'Hospital Patient Advocate' about that particular staffer's care?

We certainly let the charge nurse know, :mad: & it should have been 'written up'.:( (but who knows, who's covering- who's *****)
But you're right tho, every day is a day of challenges - it reminds me of my sailing days. Hours of peace and calm immediately followed by minutes of panic and immediacy (something always will go wrong-Murphy's law)

[dahlek]

Thats as good a definition as any?
As for the next issue...Is he at Hopkins? Please let me know.... I've reasons...legit ones that could be useful? Albeit vague at this point?
AHH, Squeaky wheels don't get grease where you are! Not unless youre a Star as in Chris Reeve! ...I was present on premises, tho not witnessed the accident...Wowsers...lots of tales there to tell, but never in public?

Um, er, Can I adopt your daughter? Just cause she's sounding like a basic heart felt good person? That is, if'n you don't feel selfish...I make a great stuffed turkey recipie, one w/minimum effort max flavor reward? I'll even give it to you or your wife? I'm not shy in that quarter...but be forewarned..it's MAX cholesterol...but, the triptophanes are worth it! BIG TIME! You can get a 'call' for a book cy from me!

As for the charge nurse...put stuff in writing...then ask about 5 days later for copies of records...if not IN ask the DER WHAT? Questions...and every day after that...ask [pay/sigh] for record copies...and plain old let THEM know yer watchin'? Be surprised how many folks ignore plain old bullsh**! I do think the system is designed so... another tale of mine at a not so long later date. FOR YOU? Super hugs and fuzzies for you and all of those special to you You kind of have to spread out the stress, strengths and plain old energies to be as they say 'economic in the optimal distribution of resources'...Hey! Get the Idea I used ter work fer the Gummimnt? Once in a while a phrase really means something? Maybe this one?

Soo, for now, what is the Mountain, or Speed Hump? each have their own special features...Hugs and fuzzies! - j

What's it they said on one of the "Startrek Series"? We ARE made of 'starstuff'. Science Fiction has reflected or is a reflection of realities/sciences for the last 50 years...In my heart, there is NO DOUBT...NO FEAR!

[nide44]

J-
I PM'd you
re: Hopkins

[nide44]

Update on Adam
He's doing much better medically.
The trache is out and the hole is healing. His breathing is almost normal. He's still in in a neck brace, but that should be off in about a month. He still only can move one finger (the 'bird") slightly and the same with the thumb on the same hand- but he is learning rehab techniques to get around this obstacle. He is learning how to hold things with his arm braces and attachments to them. He can freely move his arms and can operate an electric wheelchair with the joystick. He is rolling around quite well.
His appetite is back and he's eating all regular meals (and whatever he can entice visitors to bring.(subs, burgers, o-rings, etc) But he needs to be fed. He can't manage to feed himself, yet.
He did learn how to brush his teeth with the toothbrush fitted to the holder on his arm brace. (he says he didn't get the back teeth too good . ) .
Actual recovery of function is slow , but rehab helps him utilize what he has gotten back - so far. We can only hope and keep praying for more recovery of his hands and his legs & feet.(no sign there, yet).

[Silverlady]

He is going to walk out of there yet! Unless the two of you decide to have wheelchair races out the door. Don't get in a hurry. Let him get everything he can out of the rehab that he can. Is his speech normal? I've forgotten.

You and he are getting there....one step at a time. Baby steps make big steps some day. Hang in there.

Love,
Billye

[Brian]

His lucky to have such a good caring family, it makes me wonder how some people keep their jobs, their suppose to be trained but i don't know, anyway, little improvements are really huge considering what had happened to him, i am hoping for continued positives for him and look after yourself mate.
Brian :)

[rfinney]

Bob,

I am so happy to hear that your son is progressing. It is just so encouraging that he is advancing in terms of his medical condition and his functioning. Once you start moving forward, you just never know how much recovery is possible. I have had the good fortune to be involved in a few situations that were amazing - at least to me. Now I know that this kind of recovery is not at all amazing. In fact, patients who are motivated, receiving quality medical care and rehab, and with supportive family and friends are actually very good candidates to make excellent recoveries.

Since by nature and profession, I will often focus on the emotional and psychological aspects inherent in these situations. I know you are doing all you can to keep positive, without creating false expectations your yourself or your son. This is one way in which you are contributing mightily to recovery. I also hope that the attending medical professionals are tuned in to whatever your son needs to make sure needs, other than medical and physical, are being recognized and adequately met.

If you have ever have any questions or concerns in this area, feel free to PM me.

Take care,

rfinney

[glenntaj]

And I hope his recovery continues to arc up as time continues.

Interesting that he can move the "bird" finger. Perhaps, given his situation, there is considerable incentive to do so. :)

[nide44]

Billye,
Yes his brain function is normal (although that's been debated since he was a young child ;) ). He's the reckless, irreverent SOB he allus wuz.

rfinney,
I had to give the docs a 'heads up' about his mental depression a week or so ago. I'm afraid they aren't on top of things as much as I feel they should be.
They handle so many SCI cases, they kinda assambly line 'em-
"head 'em up, & move 'em out".
I think he's hoping to do his outpatient rehab at Kennedy Kreiger (Hopkins) with McDonald (Chris Reeve's doc), after he gets out of Kernan's (U of M system) in Dec. I think they focus on a brighter outlook and are more attentive to the individual.

Glenn,
I think you're right about that 'incentive'.

[dahlek]

soo much of it is using the mind to overcome the shortcomings of the body. You have been an example of that to ever so many on the boards.

I'd bet money [almost] that Adam is like you and so many here:

TOO DURN STUBBORN!!!

Even tho there are times that seem, well, a bit thin in terms of quality, we find a way to get thru it. Most of us do because there is simply no other acceptable choice. I guess keeping up that stubborn state of mind and the crumbs of hope we can find, whenever we can find them, then what we do with it all is one of those life test things. Goodness knows we all face them to some degree.

We have hope to look forward to, looking back is a waste of energy. Put that effort to more important things.

Hugs and pain free moments to you all - j

[nide44]

Adam is progressing. Slowly...... but progressing... a bit.
He moved his legs a bit, but 3 days later he couldn't again. I don't know what that means. His legs burn and hurt. He can't get comfortable either sitting or sleeping.
He has had this pain in his legs, so they did an x-ray.
It seems now that he has "HO" (Heterotopic Ossification) , a chronic incurable condition that occurs sometimes in SCI patients. Calcification crystals form bony masses in soft, muscle tissue near the hip joints (and other places too).
He has it in both legs. This is not so good.
Treatment (6mos-1yr of medication and strenuous physical therapy to keep the joints flexible) may halt progression, but not necessarily. If it does, he can expect occasional flare-ups and necessity of future treatments, for the rest of his life.
His right hand seems to be getting a bit stronger, but he has no triceps 'firing', his biceps to pull -are working, but push or throw isn't. That means he can't re-adjust himself in his chair or bed to relieve the constant pressure of never moving. So he still has to be 'turned'/re-positioned every 20 mins in the chair and every 2 hrs in bed- 24 hours a day.
So far, his discharge date (12/5) hasn't been changed. I'm hoping it will - so he'll get more therapy (it seems something always interrupts or causes him to miss therapies, occasionally).
The philosophy at this facility is "If it (hands. fingers, legs) shows promise and works-they give therapy. If not, no therapy is bothered with to try to get him able to move anything.
Its not a very pro-active method, in my way of thinking.
There are other methods that do try to get inactive muscles and limbs to work by constant e-stim (electrical stimulation) on hands and legs. He gets some, but not as much -or where I feel he should.
If he shows promise betweeen now and 12/5, he could be extended by a week or two. I hope that does happen. It'll mean he's doing really well with his therapies.

[MelodyL]

Hi Bob:

Your life right now is very stressful and besides having PN, well having a sick child (no matter how old they are), well it hurts. I know this.!!

Just wanted to send you a great big hug.

warm fuzzies.

melody

[Silverlady]

I just wanted to send my hug with Melody's. Wish I could do more.
Love,
Billye

[Boopers]

Oh Bob, what a horrific accident. I'm so sorry. May God pull you through this.
I am putting your family on my prayer list.
Good luck to your son and the family,
Linda

[Boopers]

Hi Bob,
When I posted the last post, I had only read the first page of all this. I didn't realize there were alot more pages. I don't know how I missed this, but I did.
I just wanted to let you know to have hope and faith.
My Mom broke her neck about eight years ago. She was in her bedroom and saw a spider on the ceiling, so she pulled a chair up and stood up on it to kill the spider and lost her balance. She fell straight back, hitting her head on the footboard of the bed and broke her neck. It took about a year, but she came out of it, able to walk and talk like normal. The only thing that she said lengered on was horrible headaches. Other than that, she was fine. She has passed now but I wanted to let you know to keep the faith as I know that prayer was what brought my Mom through it.
God Bless you All,
Linda