Another new SCI 6/16/08

[ConnorsDad]

Hi. Figured I'd better introduce myself and my family, as I expect we'll be seeing a lot of each other! My 18-year-old son ran into Hume Lake in California in June and didn't come back up. His friend found him drowning with two dislocated shoulders and what was later determined to be a C4/C5 injury. He was flown to the Trauma 1 unit at Community Regional Medical Center in Fresno, where his vertebrae were fused together. We were in the ICU until last week, when we finally moved to the stepdown unit in the same hospital. My son had two bouts of pneumonia, both times requiring the roto-prone bed to recover. He's vent-dependent, although he has been weaned down to an FIO2 of 28% and a PEEP of 4. He currently has no feeling or movement below his neck, a very difficult situation for an active 18-year-old.

He does have sensations of tingling, burning, and occasionally like electric shocks in his legs, arms, and back. He sweats all over his body. He has intermittent moments when he can feel touch on his feet, although this is rare. His toes will occasionally respond to light touch by moving. I don't know if these things mean anything, but we're hopeful.

We are now considering moves to facilities for further care. We actually live about 2.5 hours from here in the South Bay. Santa Clara Valley Med Center evaluated my son in July and rejected him. Insurance (BC/BS) wants to ship him off to Kindred in Folsom, by Sacramento. We're told he can't sustain 3 hours of rehab a day so he's not a candidate for rehab. Is this true? He did an hour on the Passy-Muir valve on Friday, and he has passed his swallow eval completely and has been cleared for all foods and liquids. He still has a feeding tube, but is that necessary if he can eat and drink?

We need a place that will do something for him besides "care" for him by leaving him in a bed somewhere. We need to get him off the vent if it's possible, get him set up for a chair, and get him to people who will help him recover as much as he can. Insurance wants to do as little as possible. Is there anyone who advocates for patients instead of for the insurance and hospital interests?

Sorry to dump so many concerns in my first post. I suspect that happens a lot here.

[SCI-Nurse]

What is his actual neurologic level off injury and ASIA category? If he is breathing for even short periods off the vent, he is probably C4 or below and weanable from the vent.

Ask about SCVMC again. Why was he turned down? Ask that he be re-evaluated.

Under no circumstances allow him to go to Kindred or any other subacute (nursing home) level program that is not a a CARF accredited Spinal Cord System of Care or Model System SCI Center and that does not offer comprehensive SCI rehabilitation.

He can participate in 3 hours of therapy, even on a vent, at such programs, although some therapy may have to be done in bed. They should be getting him up in a chair at the bedside NOW (and should have been done this for the last several weeks) to build his endurance for being upright.

Download the clinical practice guidelines on respiratory management in SCI at this URL and take it to his doctors and nurses now. It will give guidelines on proper weaning.

http://www.pva.org/site/News2?page=NewsArticle&id=7645

You will have to fight HARD with his insurance to get him to the right place. If by South Bay you mean in Southern California then Rancho Los Amigos should be considered. Try to get him accepted to and funded for Craig in Denver if at all possible.

I believe he has to be less than 18 to get into Shriner's in Sacramento, but at least call them and see if that is the case.

Please come back, ask questions, and keep us informed about your progress.

I would also recommend reading Roger's thread here about how he had to fight his insurance company to get the best care for his son. He may be willing to talk to you by PM or e-mail as well: http://sci.rutgers.edu/forum/showthread.php?t=77419

I would also recommend getting this free book ASAP. It has valuable tips for fighting your insurance company:
http://www.josephromanolaw.com/english/book.html

(KLD)

[watchthisbaby]

ConnorsDad I'm terribly sorry for what happened to your son. I'm glad you found CC, and I hope the wisdom of others here can assist you and your family. Welcome, and hang in there.

[momo3]

So sorry that your family and your son have to go through this. I will echo KLD's response. The main thing is your son's recovery and rehab. It will take a fight against insurance but you need to fight. Keep us informed about your son. There are many of us here that want to help. Ask away-nothing you ask is stupid, dumb or meaningless.

Kathy

[ConnorsDad]

Thank you for your quick replies. I appreciate the welcome and the advice - I've already ordered the book - wish I already had it in my hands!

Tomorrow morning the battle for transport will begin, and I know next to nothing about Craig, or Shepherd, or RIC except where they are. If SCVMC rejected him because he didn't meet their criteria, aren't these other places going to do so as well? BCBS (PPO, BTW) is saying he needs a place called an LTAC, which is why they are pushing Kindred. We are not interested in moving further away from home unless the quality of care is there and is vital. From what I can gather from these other threads, quality of care is extremely important, so that means moving the household, I guess.

Does anyone know anything about the University of Washington Medical Center's program in Seattle?

Connor is down to 24% FIO2 and 2 PEEP today and stable. How long can I refuse transport out of this hospital before the insurance folks quit paying? And yes, I have a lawyer to push back with!

Thanks for your help. I wish I'd found this place two months ago.

[SCI-Nurse]

As I said above, do NOT allow him to go to a LTAC...this is insurance-speak for a nursing home that does ventilator weaning mostly for elderly COPD patients (like Kindred). They will have little or no therapy, and he will not have staff who knows much of anything about SCI. I have seen nothing good come out of these transfers, and lots of bad...worse depression, contractures, pressure ulcers, etc. etc.

Again, ask to have him re-evaluated by SCVMC and get evals requested for Craig too. University of Washington is a fine facility, but their criteria will be little different from these other SCI centers. Insist on getting the reason he is turned down (if he is) in writing, and insist that your appeal is reviewed by a physiatrist (your right), not just by any physician.

(KLD)

[Evonne]

who is your neurosurgeon there?? i had Dr. Myers and he turned out to not be a great choice......after i left stepdown and entered San Joaquin Valley Rehab (SJVR) i switched to DrHenry Aryan who was alot better. they also looked into Santa Clara 4 me but since i was not on a ventalitor they said stayin local was better 4 me. there r 2 good rehabs there in fresno 1 is there at community (leon S Peters)supposed 2 have a good SCI unit and the other is where i went SJVR............i was a patient at the SJVR hospital for 6 months, my pt's and ot's were the BEST and my physiatrist was the greatest...Dr.Michael Azavedo
send me a private message if u would like to talk about any more of this in detail. wish u the best

Evonne

[ConnorsDad]

Thank you both for your responses. I've got a couple of questions -

University of Washington is a fine facility, but their criteria will be little different from these other SCI centers

Why would UW have different criteria?

who is your neurosurgeon there?? i had Dr. Myers and he turned out to not be a great choice......after i left stepdown and entered San Joaquin Valley Rehab (SJVR) i switched to DrHenry Aryan who was alot better. they also looked into Santa Clara 4 me but since i was not on a ventalitor they said stayin local was better 4 me. there r 2 good rehabs there in fresno 1 is there at community (leon S Peters)supposed 2 have a good SCI unit and the other is where i went SJVR............i was a patient at the SJVR hospital for 6 months, my pt's and ot's were the BEST and my physiatrist was the greatest...Dr.Michael Azavedo

Evonne, Dr. Myers did the surgery to fuse my son's vertebrae, and he did a very good job with it. Other than that, we haven't seen him much. I'd love to hear more of your experience if you want to PM me.

Finally, if my son is cleared for all foods and liquids orally, is there any reason to keep his feeding tube? Seems to me it's just another source of infection now.

Y'all are great - thanks for making me welcome and being so willing to help.

[Wise Young]

Thank you both for your responses. I've got a couple of questions -

Why would UW have different criteria?


Evonne, Dr. Myers did the surgery to fuse my son's vertebrae, and he did a very good job with it. Other than that, we haven't seen him much. I'd love to hear more of your experience if you want to PM me.

Finally, if my son is cleared for all foods and liquids orally, is there any reason to keep his feeding tube? Seems to me it's just another source of infection now.

Y'all are great - thanks for making me welcome and being so willing to help.

Connor's Dad,

I wanted to post my support of KLD's opinion that Connor goes to a CARF-accredited rehabilitation center. You should find out why Santa Clara Valley Medical Center rejected your son. It is possible that he was rejected because they don't have the ventilator beds to take your son.

Wise.

[fishin'guy]

Connors dad, I'm so sorry to hear about your family's tragic life change. I can't imagine this happening to one of my kids. If it did I'd wish it upon myself again. It's just not fair for this to happen to young vibrant kids who won't get a chance to do things in life like I did til 57 when it hit me.
As for the U of W rehab facility, I can give RAVE remarks. They have a team that care for people. Specialists in all fields get involved. I fawoke one morning crying in my oatmeal, for no reason, and I mean NO reason.Didn't feel sorry, felt great gratitude for their support of family, friends,etc. Nurse talked to me and within 10 min. had my resident(who was the greatest) ,actually 2 res., then psych, w/in 1 hr, and they determined I just needed a bump on my antidepressants, which I was already takeing a low dose for nerve prob's from lupus.
Then there's the OC's and PT's who are the most incredible professionals. It is such a great facility they train from Alaska to Fla.The gal I had inpatient had put in 4 yrs at Vets rehab, whose standards for work and amy of recovery was greater than most facilities. Some of the therapists
(2) have been there for close to 20 yrs, so it is a quality place to work, so many of them remain there for years. In fact I got to be on a first name basis with all of the therapists, and there's like 30 of them.
I got treated with everything from Estem's to massage, ultrasound therapy. I could hardly belive the knowledge each therapist had of physiology, and anatomy. I got to see numerous success stories of other patients while there I personally have gone from 0 feeling and use of legs,to being able to stand on one leg, and have been walking in parallel bars. I get braces next week to get me up into a walker, and it's off to the races from there
As you can tell by my rambling on, I really enjoyed and looked forward to my therapy sessions, I made quite a few friend there, not just a PT, but a partner in my health and well being.
I certainly hope the best for your son and your family, and you need to take care of yourselves as well, ok? Take the time to still smell the roses, so you'll be able to cope and get your son out to do so also. God bless.