New and needing help

[Scottysmom]

Hello, my name is Jodie and my son Scott was injured January 17, 2004 in a skiing accident. He is L1 incomplete. It was a burst fracture that was taken out and replaced with cadaver tibia, screws and plates. He also broke his right femur. Scott was in intensive care for nearly 2 weeks and now in rehab. My son is 19 and had no insurance at the time of his injury. I am in the process of applying for Social Security and Medicaid for him. If anyone has been through this I would really welcome any comments or tips.

Scott is now in therapy. He has a back brace that will need to be worn for who knows how long. He has some sensation in his left leg, can move the muscles and bend the knee. He cannot move his ankle. His right is slower because of the femur break but has a little sensation. Foley cathader, no bowel control. He has a bacterial infection in his incision site (sudamosis?) and is confined to his hospital room for 2 weeks. They have therapy in his room until that is cleared up. He has a pretty good attitude and a tremedous belief in God. I know he would benefit from talking with people in his situation. I want to help him but not sure how. I am there for him, talk to him, comfort him, but what I really want to do is make him the way he was. I guess that is why I am here because I want to fix him and I know that is impossible. I haven't given up hope that he will walk but at the same time do want to be prepared for what might not happen. You know what I mean? I hurt for my son and I wonder why this happened. I have to believe that this happened for a reason unbeknowst to me and that wonderful things will come from it. I have to make myself believe that or the pain I feel for my son overcomes me.

I would welcome any thoughts or comments on my son's situation. I hope to find some comfort and advise here to help my emotional state as well as my son's.

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~Jodie~

[mom5]

Hi Jodie, my son was in an accident 6 months ago. He didn't have insurance either. We've been through alot and alot still ongoing, but it is getting better. He is 24. My son also has a tremendous belief in God, and that gets him through. He believes that God isn't done with him, yet, but don't get me wrong, it is very hard to adjust--it's just that a positive, hopeful attitude helps.
My best advice is to be there for him, acknowledge his feelings, but be as positive as you can. Try to find out if there is a rehab resource service available. Read everything about his condition that you can get your hands on. And whatever you do, don't sign anything saying you will be responsible for any of his bills. He is of age, so they can't come after you, and if he doesn't have any insurance medicaid and SS will help.

My son was in a coma and in intensive care for 3 weeks. We almost lost him, and I was griefstricken. But I was so thankful he was alive and when the danger was past, I kept reminding myself that I still had my son. He is a para. Honestly, Jodie, I can tell you I feel more positve when I am with him. Because I can see for myself that he is alive and he is still the son I love so dearly. When I get away from him, I see people doing things; riding bikes, jogging, playing ball, etc., and my heart hurts so bad, because I know he can't do those things, now. When grief overcomes me, I tell myself that he is alive, and I thank God for that, and I remind myself that they're working on a cure.

It is important that he gets spinal rehab. Is he going anywhere after he's released from the hospital? There are some good ones. Where are you located? I have that unlimited long distance, perhaps sometime if your son needs to talk to someone, mine can give him a call. It is a scary place you are in--a mother fearing the unknown for her son. I didn't know anyone in my shoes until we got to rehab and most of the people there were older. So, I know how alone you must feel. Hopefully the parents on this site can help you along.

Take care and GOD bless you both........

[SCI-Nurse]

Is he going to a SCI rehabilitation center? It is critical that he go to a center that has SCI as a specialty. Too many rehab centers rarely see people with SCI and have more experience with brain injury, stroke or joint replacement patients. They also rarely have age-peers or other people with SCI on the unit at the same time.

In most states, Medicaid will pay for acute rehabilitation within your state. Where are you? We can help you find an appropriate center that is either a Model System SCI Center or at least CARF accredited. He should be moved ASAP. A good rehabilitation center would have him on a bowel program already and get the foley out and start him on intermittent cath. There is also no reason he should have to be isolated in his room for a wound infection with pseudomonas.

All the members on this site hope to walk again someday. Many will tell you that they would give this up to get bowel and bladder control and sexual function though. Walking is not always everything. On the other hand, it is too early to tell how much he will get back. At least 2 years is needed to tell this. Meanwhile, it is necessary to deal with what he has now, learn to live with it, learn to stay healthy, and still maintain hope that the cure is just around the corner.

Continue to post here and let us know how we can help you. Get him on line here too ASAP.

(KLD)

[kate]

Hi, Jodie

Sorry that you had to find us, but really glad you did. I hope the medical people are telling you that it's VERY good news that your son has some return of sensation and movement after only two weeks. My husband was injured (C6) in a skiing accident on March 7, 2001. He walks today. He climbs stairs, and crawls, and kneels upright. He skis on a sitski! The first weeks are a nightmare that doesn't stop; everyone here knows this.

We also know that the biggest thing to expect in the next few months is UNCERTAINTY. My mantra for the whole first year was: Either this will become routine, or it will go away.

That's exactly what happened--many things did go away, and many others that seemed grotesque and horrifying became, yes, routine.

Use the forums! There's so much experience and goodwill here, and all of us know exactly how you feel. Take care.

Kate

[LauraD]

Hello and Welcome Jodie!!

I am mom to Heather, age 11, T-12 complete, 3 years post SCI. In the beginning so many things are overwhelming. I look back now and wonder how we all made it through it. Heather had just turned 8 and we had just moved into our house 12 days before. My best advice is to take it one day at a time and don't forget about taking care of yourself while being there for your son.

You are lucky to find these forums so quickly. You will learn much from those who know what they are talking about because they actually live with it daily.

Life has changed for us since the accident but Heather has not let it slow her down. She still rides her horse and does almost everything she did before. You overcome and adapt. I would love more than anything for her to walk again but I am thankful everyday that she is still here with us.

[Scottysmom]

THANK YOU ALL for the responses to my plea. It is comforting to know that there are others like Scott and me out there.

To answer some questions: We are in Wyoming. The neurologist suggested Craig Hospital in Colorado but because of no insurance they will not accept him. We are in the process of applying for Social Security and Medicaid. He is currently at Black Hills Rehabilitation Hospital in Rapid City South Dakota. They have not yet started the bowel program or taken the foley out. When I talked with the case manager this morning she said he has a tentative discharge date of March 12. I'm thinking...then what???? I have scheduled a family conference for next week to discuss these issues and address the infection and bowel program.

I cannot be with Scott as I have younger children too so I go over on the weekends. I am just heartsick thinking about him sitting in his room alone. I am terrified of the future and wonder how all of us will get through this. It's hard to accept the fact that my son's life has changed so drastically and ours right along with it.

Thank you Mom5 and Kate for sharing your stories with me. I do have hopes for a brighter tomorrow. I am very happy to have found this site.

Nurse, do you know anything of Black Hills Rehab Hospital? I would appreciate any information you could give me.

[chris B.]

http://sci.rutgers.edu/forum/images/smilies/smile.gif http://sci.rutgers.edu/forum/images/smilies/smile.gifHi Jodie, and welcome to this great forum. It will become an invaluble resource and excellent support for you and your son. My son, Brian is 19 yrs. now, injured 3 yrs. ago in Jan. racing in motocross race. T5 complete. I will admit our lives were changed instantly, but you just go day by day at first, then all the stuff that comes with SCI becomes a routine, and if new problems arise you deal with them, because you have to. As a parent I can feel your heartache for your son, and still cry when read your post. Please use this site, your family and any other outside means for emotional support. Take care of yourself and it really sounds as though you are headed on the right track. Your son is lucky to have you right now, and I am sure you will create an even stronger bond in the months to come. I am emailing my sister and asking about the rehab center in Rapid City. Her and her husband are doctors in Rapid City Regional Hospital. I don't know if she will know alot about it though, as they moved there last summer.
My thoughts are with you, and will say a prayer for you and your family.
chris.

[Chris Chappell]

Jodie, glad you found us but sorry for the reason.

Did you speak with Ken Hosack at Craig?

How are things progressing in Rapid City?

How's Scott doing?

[Scottysmom]

ChrisB anything you could find out would be wonderful! I thank you for emailing your relatives. Please let me know what you find out. Perhaps they know of Scott's injury as he is the only person with SCI. I am sorry to hear about your son (those darned boys) and hope that things are going well for you. You are right in taking one day at a time. Just seeing my son and being able to kiss his cheek gives me the strength to go on for him.

ChrisD - I just got home from visiting Scott all of today. He is still in isolation. His rehab dr. was not available today so I will address this issue on Monday. However, it was a wonderful day. My son looked great, had a positive attitude, and was excited to show me that he can transfer from his bed to his chair. Not an easy feat especially with a broken right leg...but he did it and was so proud. My instinct was to go assist him but I knew he needed to show me that he could do it on his own so I stood back and watched. It was wonderful. The same way I felt when he took his first steps as a baby. He is on a bowel program and he did tell me that he feels degraded by that whole experience. The foley is still in but the nurse said they will start the interminttent cath tomorrow. They were making sure he could transfer himself safely to his chair before introducing this. So I feel better that this will be happening. He is bearing all of his weight on his left leg now and only about 40 pounds on his right. He can move his left leg really well but he cannot get the ankle to move at this time. The right is coming along but because of the injury to it the process is slow. I do have to say the all the staff at the hospital are very nice and helpful and check on Scott often. Scott seems to be pleased with his therapists so some of my fears are gone however I still wonder if enough is being done. The progress he has made in 5 days is tremedous. He does have a stander in his room however I did not get to see him use this today.

I guess my next thing is to talk to the team and find out what Scott will be needing when he is released in the line of equipment.

I feel better seeing him today. I see how hard he is working. He has expressed that he is not healing fast enough for his liking. I'm sure that anyone in his position has felt this way. Most of all I saw his smile, his humor, his charm that makes Scott the wonderful person he is. I guess I somehow thought that this injury would change that too...I was happy to see that it hasn't. A valuable lesson learned...this doesn't change the PERSON that Scott is...doesn't change the dreams he still has for his future...only now he has to find ways to achieve them in different ways.

LauraD thank you for your story and words of advice. Thanks to all of you that have replied to my post. It helps and comforts me so much to know that I have someone in my situation that I can talk to about this. This site is a Godsend!! http://sci.rutgers.edu/forum/images/smilies/smile.gif

[kate]

Originally posted by Scottysmom:



Most of all I saw his smile, his humor, his charm that makes Scott the wonderful person he is. I guess I somehow thought that this injury would change that too...I was happy to see that it hasn't. A valuable lesson learned...this doesn't change the PERSON that Scott is...


Exactly! http://sci.rutgers.edu/forum/images/smilies/smile.gif That is exactly right, and for you to know it already says volumes about you. Hang in there.

[chris B.]

Hi Jodie,
Sounds like you had a good visit with your son this weekend, and he seems to be progressing quickly, how wonderful!! My sister did respond back saying she refers every patient she sees in the pain clinic to the rehab.(Black Hills)and they do a great job and are very knowledgeable. she did not mention SCI or anyone specific however. also wanted to let you know that our lives have changed in many different ways because of SCI, but we are so thankful to have our son still. Brian did miss one semester of high school, but managed to graduate with his class. i was soooooo proud. he went to college one semester, taking 2 classes(really 1 1/2)he dropped one class. it was a good experience for him. he has had the last year 'off'?? He moved to town, last July, 3 miles from us, pop.700. has a roommate. He gets around well, as long as he can drive, wheelchairs and snow do not mix well. He is bored now, so am hoping he becomes motivated real soon. He also was riding a quad ATV 2 months after release from hospital, and has been on a few times since. He thinks he is going snowmobiling in mountains with friends in a couple weeks. His dad and I are not crazy about that, we don't mind when he rides around here though. So, the point i am trying to make is that ALL life goes on, in some form, even though it has been altered.
I kept a journal the 3 months Brian was in the hospital, as it seems it was the only thing i was in control of, then. Hard to read later though.
Take care of yourself and your heart. will be thinking of you.
chrisB.

Were are you State and how can I possible call and talk to you.

Steve Pisano