My dad is in ICU with 3 spinal injuries!

[doranne]

We don't know what to do. My dad is 72 years old--VERY healthy, but fell from a ladder 10 days ago and has many broken ribs, still on ventilator, moderate head injury (he's starting to wake up and respond to commands), and C2 & T6 fractures (probably no cord involvement) and an "exploded" T12/L1 (almost certain cord involvement).... He has a right shoulder (scapula) fracture and for some unknown reason, is not moving his right arm much. He seems to wince to pain in his upper legs, but no leg movement other than from his pelvis area. They expect him to wake up completely, but are unsure of how much or little cognitive changes to expect.

The doctors are saying that he needs a halo for C2, brace for T6, and fusion surgery for T12/L1. They are recommending that we withdraw support because even if they bring him through the acute hospitalization (and they think they can), they say he will surely die of respiratory or skin pressure complications within a few months after discharge. My mom is healthy and willing to do whatever is necessary to care for him, they have excellent insurance--including long-term care insurance, and I'm trying to find out what options are available for him.

He's at a level 2 trauma center, but I don't see any evidence of a spine center or rehab unit here. We're in Northern California. Where should I go to find options for him. Is it really as hopeless as these trauma surgeons (and neurosurgeon) suggest? What should we do?

I was surfing the web and came across your site.... Is this the right place to ask these questions?

Thank you so much!

DorAnne

[chasb]

doranne,

Six locations to choose from for rehab in CA.

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

[BeeBee]

DorAnne: I'm very sorry to hear about your dad. My thoughts and prayers are with you. I'm sure the nurse and others will be around soon to point you to some excellent SCI centers, Northern California is a "good" place to be. And YES, this is the right place to ask. There is a wealth of information in all the forums.
A reality check is that a SCI is very hard on you. I'm not going to tell you what to do, but what to think about while you're making your decision: significant weight loss (and maybe he can spare it?), repeated UTI's, lung infections, loss of appetite, memory issues, the wear and tear on your mother that long term HARD and very personal care involves (bowel, bladder, feeding...). 72 is very old to heal.
No one knows how he will respond to any of these issues and how he will recover, your family only can make the best decision you can with the information available. Think about his wishes, as well. Would he want to be kept alive under all circumstances? Or would he want to "not be a burden". Has this ever been mentioned in converstion or does he have an advance directive? Talk to your mother outside the hospital environment, it helps to get distance outside of his room. And don't force a decision on anyone.
I know this comes across as very negitive. I don't mean it to, I only want you to know what battles are out there. I'm the mother of an SCI, not the injured.
Come back anytime and ask anything. If you look at the Care forum you'll see that there are really no Taboo topics. If you want to know, ask. You'll be answered.
I'm sorry you had to find us and best wishes to your family, whatever your decision.

[bcsimpsons]

Doranne,
Whatever you do, don't listen to stupid doctors. Yes there is always that possibility however, it is not a certainty. If I were in your position I would do whatever I would think my dad would want. And, from what you said, that he was healthy and active prior to his injuries I would think that he would want to fight. You and your family are in my prayers. Please let us know what happens. And by the way, this is definately the right place to be for any and all questions.

Becky,
Chicago

[dan_nc]

So sorry to hear about your Dad. It must be a horrible time for your entire family! We are praying for you!


I believe the Christopher and Dana Reeve Foundation paralysis.org have staff that might be able to help refer you to services in your area. Check it out and give them a call.

[cheesecake]

Are you in Chico or UC Davis? I agree with Dan, go to http://www.paralysis.org and contact an information specialist. You can reach someone until 5 pm PST by calling 800-539-7309.

[SCI-Nurse]

Where in Northern CA? Can you get him to Santa Clara Valley Medical Center in San Jose? They are one of the leading SCI Centers in the USA and formerly a SCI Model System Center. They won't write him off as it appears they have where he is now. I have had new injury tetraplegic patients in their 80s and 90s who did well in rehab and went home with their family members....pressure ulcers and respiratory issues are treatable and preventable with proper care. If he is not getting it there, then arrange to move him soon.

Is your father a military veteran? If so, then a VA SCI Center should be seriously considered. The Palo Alto VA is the closest one to you.

Try to stick with a CARF accredited SCI Center. There are only a few in CA. Some of those listed on the URL above are NOT CARF accredited as a SCSC (Spinal Cord System of Care). The ones who are include the following:

California Pacific Regional Rehabilitation Center, San Francisco CA

County of Los Angeles - Rancho Los Amigos National Rehabilitation Center, Downey, CA

Kaiser Foundation Hospital and Rehabilitation Center, Vallejo, CA

Northridge Hospital Medical Center, Center for Rehabilitation Medicine, Northridge, CA

Santa Clara Valley Medical Center, San Jose, CA

Spinal Cord Injury Center, VA San Diego Healthcare System, San Diego, CA

St. Jude Medical Center, Fullerton, CA

VA Long Beach Healthcare System - Spinal Cord Injury/Disorders Health Care Group, Long Beach, CA

VA Palo Alto Health Care System, Spinal Cord Injury Service, Palo Alto,CA

Please come back and ask more questions. We want to help.

(KLD)

[doranne]

Thank you So much!

Wow....I am so appreciative for all of your prompt, thoughtful and encouraging responses. There is so much to think about...when I read your responses, it was so comforting to realize that there actually is someone "out there" who understands the situation my dad and my family are living through. As we've grappled with my dad's living will and his expressed wishes, we've all come to the agreement that, since there are no definites at this point, we must move forward with the best care we can find and then if he wants to make a different decision in the future, that will be up to him. It has been a tough and painful moral and ethical dilemma to struggle with the unknowns of his condition in the face of what would be best for him and most in alignment with his desires.

I've had some people from our church recommend Santa Clara Valley Medical Center, and it sounds like it meets all the criteria for top-notch excellence. So I think I will contact them tomorrow and see what they say. Even though my dad is (obviously) immobilized, I guess there must be a way to get him transferred there.... sounds like a bit of a daunting task to get insurance approval, acceptance from the new facility, and cooperation from the current facility..... But I'm up for it if that's what's hecessary. If anyone has any personal experience with the pitfalls of this type of a transfer process, I would love to learn from your wisdom!

Thank you, again, for your welcome and kindness. As time allows, I'll go through more of the past posts and I'm sure I'll learn a lot from your discussions.

DorAnne

[rfbdorf]

DorAnne -
"they say he will surely die of respiratory or skin pressure complications within a few months after discharge." That statement really got my dander up. With good, conscientious care, that should not happen. It's certainly true that things will not be easy, and there will be setbacks, but he has a damn good chance. It sure does sound like he'd be better off somewhere else.
As for advice - do whatever SCI-nurse KLD says, and you can't go wrong.
Best wishes,
- Richard

[ThomasB]

he will surely die of respiratory or skin pressure complications within a few months after discharge.

That statement reminds me decades ago I went to a medical library and looked up old neurosurgery books. The oldest was 1926 which had half a page on SCI which ended with a statement just like that. The next edition in the 1930's was a lot more optimistic and had a whole chapter. I think they are reading the old book.

Why would he have respiratory complications if there is no spinal cord involvement at C2?

I've met many people of your father's age or older living with SCI in the last 40 years. They were very much alive after many, many years.

I don't think you can really "consider options" just on paper or as a description. You'd really have to actually go through the rehab first to have any idea of what your choices were in fact. Also it takes a couple of months before they know what a persons level is likely to be. If the only permanent SCI is the low one thats a very different injury from a C2.

Good luck,

Thomas.

[SCI-Nurse]

Santa Clara Valley's SCI rehab program will be able to assist with getting him moved safely. They are very used to this type of care and needs. They have their own ICU so he does not have to wait until he is off the vent to get moved there. Work with them and push your insurance company to work with them too. Good luck and keep us informed of his progress.

(KLD)

[trainman]

I have been a C2/3 quad, on a vent, for over 20 years. To say that he has no chance to live several more years with many abilities shows that they aren't experienced with SCI.

[doranne]

Update....We're in touch with Santa Clara and they sound wonderful! I have a meeting with the doctors where he is now, tomorrow, so I'm hoping to get the process going then. Santa Clara people said they did NOT want him weaned from the ventilator--they want to do it themselves.

One clarification--perhaps you can help me know what to say to his pessimistic doctors. They say that new spinal injuries at this age are the impossible ones--if he had been injured 40 years ago, he'd probably be doing just fine now since he would have adjusted to the changes in his body. But they say that, since he is used to a very active lifestyle, the abrupt adjustment now is the reason why they believe he won't be able to make it..... The current doctors also said that, since he only has 1 of his 4 limbs working right now, he won't even be a candidate for rehab. (That sure didn't sound right to me!)

I agree with the person who said that there's no way to know what the choices are, unless we give him the opportunity to work with an experienced team to maximize his functioning......

Anything else I need to say/not say tomorrow when I meet with the pessimistic trauma doctors and get the ball rolling for transfer?

You folks are fabulous!

DorAnne

[doranne]

Thanks, everyone...

Thomas, you really articulated what I'm thinking when you said "You'd really have to actually go through the rehab first to have any idea of what your choices were in fact."

I've been in touch with Santa Clara today, and they sound absolutely wonderful for his situation. I'm hoping to get him transferred there ASAP!

I'm meeting with his current pessimistic trauma docs tomorrow.....Couple of questions: They told me that he is not a candidate for rehab because he only has 1 of his 4 limbs moving right now. What do I say to that?

2nd question/clarification: They say that if his injury had happened 40 years ago, he'd be fine now. But they believe that, because he's a new injury at 72, he will be unable to adjust to the changes and that's why the skin &/or lungs will get him..... Do you know people with new injuries over the age of 65 who have done well, despite paralysis? Any literature I could throw at them?

You folks are fantastic!

DorAnne

[SCI-Nurse]

You don't have to explain yourself...Just say that you disagree with their entire negative approach, and that so does Santa Clara Valley SCI Center (and experts on this forum if you want to quote us). Don't worry about what they think, since they obviously don't know what they are talking about. Ask them how many of them are board certified in Spinal Cord Medicine (I am sure it is none).

People who have NO MOVEMENT of any limbs are still rehab candidates, so that just shows what they don't know. The stuff about 40 years ago is also just so much BS. The fact that he was in such good shape is in his favor...there is no scientific basis for them to say the sudden disability after being in good shape is the worst situation. In fact, those who are active and motivated, and who have family support like yours are the perfect rehab candidate.

Just tell them that you and the rest of the family have made up your minds and that their hospital and "program" is not what your father needs, and that you will be moving him from there ASAP.

I agree that SCVMC will do a much better job weaning your father. They are experts in this area. Get him moved ASAP.

Once you move him, I would encourage you to write a letter to the hospital director going into detail about how negative this experience has been for you and your family. Send a copy to the risk management office and to the office of the chief of staff too (and for good measure, send a copy to the Joint Commission for Accreditation of Hospital Organizations too). I am dying to know which hospital he is in currently!

(KLD)