19 Year Old Nephew C6 C7 Complete

[AuntLore]

Borries, I am so sorry to hear about your brother. I can see that what would be a small thing before, can be a big problem for Nick now. He had a slight cold when injured and it turned into pneumonia and a partially collapsed lung within a day of the injury.

I will pray for your brother and for a cure.

[AuntLore]

AuntLore,
I've seen that Magee in Phila. is supposed to be
one of the Hospitals that's rated as tops in the
SCI field. When we were looking for treatment for my son,
that was the first on my list as somewhere to investigate.
As it turned out, his mother had a large say about him not being moved too far from home, and the circumstances of his transfer were determined in a matter of hours.
We really were in a whirlwind and the Shock Trauma center just whisked him off to thier 'sister center' closeby.
Fortunately it is a decent SCI center, and has a good reputation. In hindsight, I think that we were given the 'bum's rush' out of there (Shock Trauma) and really had no time to try to make an alternate decision. Once there, it was decided to keep him there. I'm not sure we were allowed to make the very best decision, but he demanded to be close to his young son- so we 'let it ride'. The almost daily visits with his son has done wonders for his emotional state. He was "Mr. Mom", and was his daily caregiver before the accident. These visitations would not have been possible or practical, elsewhere.

We all do the best that we can for our children, and in hindsight it is easy to be critical of ourselves. Even now, only 10 days after the injury, I already see things I wish we had done differently. I didn't ask the most important questions of the caregivers because I didn't know what they were. The first day was a nightmare in trauma. The unit at Shands in Gainesville was bombarded with cases (Thanksgiving weekend) and they left us alone with Nick after stablelizing him for over 12 hours without a doctor visiting or an answer the condition of his spinal cord (which apparently they knew from the beginning was 90% severed). The emotions were raw, Nick was aware of everything going on around him, the room was packed at all times with family people from the race track (which was a good thing except we learned later he shouldn't be exposed to germs because of stereods).

In all fairness to Shands, after that first day and he was moved from Trauma to ICU, then Intermediate Care, they have been nothing but fabulous with both Nick and my family.

Bottom line, the whole thing is overwhelming, and I wonder, is there only one right decision for the next step in Nick's care?

[AuntLore]

I am sorry to hear about another SCI. It has been over 7 months for my son and I am still learning. He was 20 yrs. old when he had an ATV accident that left him injured at T8. I have heard wonderful things about Shepherd in Atlanta. In fact, I have contacted them about their Beyond Therapy program. I have read many books that I found on the Christopher Reeve website. I ordered them and they have helped me to understand a lot of about SCI. Hopefully, a cure is soon and I really feel encouraged about what is happening with the research at this time.

Thank you for your message. I'm sure you can relate, having a son of nearly the same age. Nick will be 20 on December 18. I'm trying to be thankful for the things we have. Nick can move his arms and breathe on his own, and he wasn't brain damaged (the helmet he wore is a sight to see). After all, we still have Nick.

[alhavel]

Shepard is a great choice, I did not go there, but after I got home almost a year later I had contacted them , and talked with them in regards to what I had been doing they weere good to give me guidance on what to do. They helped me tailor a rehab program up here I coiuld use. I gave alot of the info to my PT's and we have used it to work on me.So far it;s been good, and I am now lucky to walk with a quad cane, walker or at times nothing at all. Considering the wreck I was this is really something, not only did I live through the mess I was in but I've been able to excell.
Best of luck to you

[AuntLore]

Reading your message is so inspiring. I'm am so happy to hear you are able to walk, even with assistance. Hearing of people doing more than they were expected to do is the most encouraging thing.

Thanks for the endorsement of Shepherd. I'd say it's between Shepherd and Jackson in Miami at this point. I'm thinking my sister and her husband should tour and meet the people at these faciltities before deciding. I don't think it's a coincidence that I keep hearing how good Shepherd is.

[Brighter days]

AuntLore:

I'm so sorry. My husband was just 28 when he was injured -- C5/C6 complete -- and I truly understand how devastating this is. You are trying to sort through a myriad of medical and administrative decisions -- all of which are incredibly important, as well as trying to soothe the one you love who suddenly can't feel or move his body not to mention your own shock. The grief, panic and stress levels are overwhelming.

You did well to find this site so soon. Post all of your questions -- we'll answer them. Everyone on this site has "been there" and we want to help.

I can't comment on Shephard although I hear it's great. I think any SCI site is surprising once you get there - there is a lot of responsibility put on family members from the start, and at least one family member should be with him at all times to make sure he gets proper care. Turning is essential so that he doesn't get any skin breakdown.

Try to get as much time in rehab as possible. Be prepared to be there for 3 months. While he is there, start on home modificiations asap. Also, order the shower wheelchair asap once you get to rehab so that he has that ready when he gets home. Take your time when choosing his wheelchairs -- don't let them rush you. Demand to see all makes and models. With his low level of injury he may wish to use "powerassist" wheels on a regular manual wheelchair -- ask about that when the time comes.

If you have good friends or family members nearby, try to get a schedule going for homemade meals to be delivered every night -- nutrition is essential and rehabs often fail on this point.

This is an important time, work hard, take deep breaths and keep smiling for him.

Brighter days

PS - you'll hear that there is a new "normal" your family will come to know. That may seem hard to believe, it is for me too, but I can say that over a year post-injury there are new routines now, new ambitions, and still a lot of laughter in our lives.

[AuntLore]

Thank you so much! Your message is full of good information, specifics I needed to know, plus it's encouraging. You sound like an amazing woman. Your husband is a very lucky man.

I worry about my sister ... with five kids, one grandchild (six weeks old) that she is suppose to keep while the mother (her daughter) works, she home schools her 16 year old, and has very active 10 and 8 year olds. I have offered to keep them (an hour away from their home, school, friends, teams), but no decision has been made. Now that I know to plan for three months, that helps. I had a feeling a parent needed to be there all the time to be his advocate no matter how great the facility. Then there's the modifications to their house, and the equipment. Your advice is great on that. I would have never known what to ask for.

Thank you. I wish I could see a year ahead to know how things will be.

[MotoRacer598]

I heard of nicks crash from a friend who races still. I use to race motocross and gatorback alot but i was injured racing crotch rockets in Feb 05 iin Homestead. I was flown to Jackson were i had my surgery and was going to do my rehab there but my ins company had worked out a deal with Tampa general so I was flown back up here. Im C5-6 incomplete. I was glad I was at TGH because i had friends and family visit me everyday. I have heard nothing but graet things about both sheperd and jackson but the fact that jackson is close to home and family and friends will be able to visit him will help him stay positive.

As far as equipping the house and equipment Fl has a program called Florida brain and spinal that will pay for all modifications neccessary. The hospital shouldve already contacted them. Also for more info call Florida Spinal Cord research center at 800-995-8544 or website is www.flspinalcord.us if you call ask for Justin he helped me out a ton when I was first injured. Tell him I gave you the number he's actually a good friend of mine now.

If nick needs someone to talk with about everything thats going on i'm not far from gainesville. Tell nick to stay strong and positive!

[Broknwing]

Lore-

First of all, sorry to hear of Nick's accident...Wow, it's tough to read what date it happened on b/c that's the 3rd anniversary of my injury....and I too, live in FL...He is in a good accute care center at Shands. That's a great start...I echo the sentiments of the other people who've recommended Shepherd Center in Atlanta. I only WISH that had been offered to me & my family at the time of my accident...We were only told about the place in Orlando that was associated with Orlando Regional Hospital, which I wouldn't recommend to ANYONE...Where in Florida does Justin actually live? Where do you live? MotoRacer is right that it does help to have friends visit...so IF he lives close enough that Miami would be regularly convenient for friends then that might be a consideration too...HOWEVER, I've known more people happier with Shepherd than Miami...I'm in central florida myself, so either one is relatively convenient...

[AuntLore]

Motoracer 598,

I am thankful at how generous you (and others) have been in this chat room. Everyone has their own issues, yet they take the time to support each other.

Thanks for the info on Florida's programs to help. I had no idea that was available. It's possible my sister and brother-in-law are being given this information now, but you never know. I am trying to send emails, make calls, and just generally organize information for them, so they can concentrate on Nick. What you sent will definitely be included.

Nick and his family live in the Kendall area of Miami (southern Miami), so Jackson is definitely more convenient than Shepherd. I am going to mention to my sister today that having Nick's friends nearby to visit, where ever he goes, might be an important factor in keeping his spirits up. Which are, by the way, pretty good. I always knew he was a determined and focused young man, but I am amazed by his strength.

I've told my sister about this chat room and will make sure Nick has the Website and your "names." He has a myspace, too, so maybe you could send him a message (he'll see at some point). Plus you can send a message to him which my sister is reading to him on his Website www.nickdepalo.com.

Thank you.

[AuntLore]

Broknwing,

It must be difficult to see the anniversary of your accident brought yet another accident. It's a phone call I will never forget. I grew up in Orlando (and Titusville), and we were on our way to Disney when we got the call. I haven't had one waking moment since that call that I haven't been thinking of Nick...period.

I have heard such great things about Shepherd, but then there's the friends visiting (of course, motocross friends are everywhere). I know Nick's parents are weighing the choices carefully, trying to decide what to do. I think either way would be good. They are both great facilities.

Thank you.

[MotoRacer598]

AuntLore,

No problem i'm glad to help my parents were in the same shoes as them not long ago and its hard enough to deal with the injury so anything i can do to help nick and your family is not a problem. I have talked to justin at the Spinal Cord research center and told him the family may call. I'm sure that brain and spinal program has been notified of Nick its required that all hospitals notify them when a patient arrives. its a excellent program that pays for mods to houses and rehab if your ins. company runs out of funding.

I am sure Nick is a strong kid I have heard about how Fast he was on a bike and anyone who races motocross is tough! Good to hear his spirits are up and I have been checking his website daily sent him a message last week.
I know right were kendall is i had a racing teammate that lived there.
I will search for him on Myspace and send him a message. Tell him to stay strong and we're all here for him.

[dan_nc]

Lore, I am so sorry to hear about your nephew. Your family is in my prayers.

[teach1]

Lore,

We did not go far from home for rehab (we strongly consisdered Houston and Atlanta) but chose to stay in Little Rock at BHRI. The main reason was my son had two older brothers and lots of friends and family that lived near. That proved to be a huge part of his therapy was having family and friends visit daily.We were so pleased with the PT/OT at Baptist. But, like I said in an earlier post...we have talked to Atlanta and interested in the Beyond Therapy program there. That is probably what we will do next. This is a very tough time for all of you. It has been just over 7 months for us and we still take one day at a time. Just keep a positive attitude around him...which is hard to do. Thinking of you'll....

[Wheelieboy]

As Shepherd Center Alumni, (Class of 2005), I would highly recommend them from a rehab/recovery standpoint. I was there inpatient, Day Program, outpatient. etc. They know what they are doing and the care is excellent. The therapists are very well-trained and patients usually have more than one. The education classes are designed for both patient and family, and the care does not end once once is discharged. I live in metro Atlanta and I am at the gym three times a week now and still getting better and stronger. I guess the one drawback is the cafeteria serves chicken cooked in every way on a daily basis.

Feel free to ask me questions, and I'll answer them from the inpatient/Day Program/outpatient/Beyond Therapy Standpoint.

Whee. My 100th post. After six months I'm a senior member..