My son Michael

My son Michael

Posted by Tara37 on Dec 15, 2014 7:55 pm

On November 12, my son was in a car accident, which resulted in his being diagnosed as a c7 incomplete ASIA B. He is being released from the hospital tomorrow, and wishes to return home to his fiance and 2 daughters. I have left my job to be his day time caregiver, with his future mom in law taking over duties in the evening. I feel as is tomorrow begins a whole new world for us. My son was living on his own and working a fulltime job to support his family when the accident occurred. However, he did not have insurance. We have applied for Medicaid, and have an appt on Wednesday.  Everything has changed. Im not even sure what questions to ask. I just know I need as much information as I can possibly retain. :mfromg: He has worked VERY HARD in PT/OT,
He has.....
-Full function in his arms
Very little in his hands
-Does have use of ab muscles
-No bowel or bladder control (cathed every 6 hours)
Started urinating on his own about 3 days ago, but not enough to empty bladder completely
He says he can feel it but cant control it
-Currently has a UTI
-Has Feeling below his knees (no control over movement)
-Tingling above the knees
-When moved too quickly or when PT tried to put him in Standing frame his heart rate dropped to 56/35
-Originally could not feel hunger or fullness- has definitely gotten his apetite back.
-Keeps all the therapists laughing and has decided to be the New and Improved Dr Xavier.
Im tired of hearing the Dr tell me what Michael can't or won't ever do. I would like to know from people who have been there.
Thank you.

Re: My son Michael

Posted by zuzu on Dec 27, 2014 11:49 pm

I have just now seen your message.  Sorry it's taken so long for you to get a reply.  First, I'm sorry your family and Michael are having to go through this situation.  It sucks, and it is OMG overwhelming.  My Mom was injured in a fall a little over 12 years ago, a C-3,4,5 incomplete quad.  The first year is the worst as far as adjusting, figuring out what the heck to do, and learning all kinds of new code words.  The thing is, once you get into this site, that will get better and it will come easier.  

Have you gotten the CRPF Paralysis Guide yet?  It is available for free both by download and printed.  I'd suggest you get both, one you can have immediately and the other for reference to look at and make notes in.  They have tons of information and referral stuff that will help you.  They also have a page that's available from their home page called "New to Paralysis" that has info that may help with some of the questions you have.  Then they have a mentor program that you can call about to see if there's someone in Michael's area who can talk with him and give him advice, help, talk through the months to come.  It would be really great if he could hook up with someone like that, guys especially could use another guy to talk about who gets what they are going through.  You could start reading the blog by Eric LeGrande's mom about her caring for him after his injury, and other posts here on these discussion pages by other caregivers.  It will help you understand your overwhelming feelings of uncertainity, fear, anger, clueless wondering, and you'll find answers to many questions you might have.

By now your son is home and you all are into some routine with his care.  You are beginning to find you have questions about different long term things you have to do or need.  Ask questions here and people will answer.  This was just a busy time of year and people didn't check as often as usual so that's why you hadn't gotten a reply sooner.

This is a whole new world for you, but lots of families have been in the same situation you are and are willing to listen, advise and encourage.  Feel free to message me with questions, I'll share what I know and refer you to the information I have that may help you.  You all are doing the best you can at the moment, just talk a lot, say what you need to each other in a kind way, know that you all have the same goal, to care for Michael in the best way possible and get him back to the life he had before the accident.  I wish you well.  Deborah

Re: My son Michael

Posted by EllenC on Jan 8, 2015 9:48 pm

Your story really resonated with me.  My husband broke his neck September 20th in a motorcycle accident.  He is a C5-C6 incomplete.  It has been quite a journey.  So many of the things you mentioned in your post were things we went through this fall.  My husband left the hospital 10 days after the accident for inpatient rehab.  At that time he was classified a C5 ASIA B.  He could move his left foot just a little and was fairly numb from just above the nipples down.  He had good right arm control and mediocre left arm control and very little hand control.  He spent almost 2 months at one of the best inpatient rehab centers and was discharged November 22nd an ASIA D.  I really credit that time in inpatient rehab with his recovery.  It seems so unfair that your son doesn't have insurance.  I hope that he gets Medicaid soon.

Has your son regained bladder control?  My husband started regaining bladder control about a week before discharge from the hospital.  He started with being able to urinate a little, then a little more...  After a week or two he could usually empty his bladder fully, I say usually because with a spinal cord injury nothing ever goes in a straight line.  He had surgery just before Christmas and was back to cathing for a few days, but he feels that his bladder is back to about 90%.

Hoping that Michael has as much success and more and feel free to message me, we've been living this for a few months now and sometimes it is nice to have someone to talk to that knows some of the things you are going through.


Re: My son Michael

Posted by PurpleBearMom on Jan 24, 2015 11:19 pm

I am a fulltime caregiver/single mom for my daughter,T1T2 complete sci. We were in a horrific car accident on our road on our way to school and work october of last year and I had let her sit in the front seat that morning, "just on the way to school" I had told myself. I cant begin to tell you all of the insane emotions I encounter on a daily basis. I feel like I will learn to forgive myself some day. I have begun advocating for child car seat safety, I feel that we are so lucky to be alive and if I can help to save a childs life, well then that is a gift I cannot ignore. She has smiled and laughed every day since the accident and it serves as a reminder for me to appreciate the small things and to be grateful that I still have Her and that we are not little wooden crosses on the side of our country road. 
I share this because I know how amazing it feels to know that Im far from the only one and we are not alone, 
A very Grateful Mother 

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