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

((((((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.



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

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

--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.

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.erJM....BE3A/Home.htm

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

LizaJane

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

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.

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

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!

((((((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