19 replies to this topic

[Sean's Mom]

My first day here today. My 23 year old son injured 11 days ago and is in Baltimore Shock Trauma. Complete C6-7. My ignorance in the first 24 hours led me to believe that walking again was the only worry. I did not know this SCI medical complication world exsisted. The last 7 days has my head swimming. Everyone's heard of MS, Cancer, CF, on and on... How can this medical condition of SCI patients be so unheard of by almost everyone I know???
My son has spent the last 10 days gagging on a tube, fighting BIG fever, cant breathe, fighting for his life along side many others. I participate in the charity world. How can I not have heard about this??? and not just me...most people I know!

Forgive my ranting. I did not come here to do that. I've come here for guidance, comfort, support, ideas and to help others if I can. We have spent the last 11 days scared every minute our son is dying. We learn about every expected complication as it happens. When I try to educate myself about what to expect, I feel like jumping in front of the bus.

We are new Ughh we dont know what is coming. I am not sure if that is a blessing or not. My son is still here..and for now THAT is my blessing.

God bless all of you. What a courageous group of people this must be.

Scared,
Sean's Mom

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[CR_L1]

Hi MOM,
Sorry to hear of your sons injury, I feel for you & your family.
You have found the best site & I'm sure you've already leant a lot from the site.
I sure you will get all the answers to your questions here,
In my thoughts,
All my best wishers,
CR

[sweeper]

Hi Sean's Mom,

We went through the same thing with our son a little over a year ago. Be brave! I'm not going to say it gets better, but as time goes you will learn a whole new vocab and understand how things work and how to cope with them. You have found the best place to learn, ask questions and just pour out your heart. The people here are amazing.
V

[Dave Bishopstone]

Hi Seans Mum,

Sorry to hear of the trauma your whole family is going through. Like most people I had little appreciation of the effects of SCI until something happened to bring it to attention, in my case my son sustained an SCI in a road traffic accident in 2004.

No pretending it's easy, certainly not for the injured person, nor the loved ones around - but all I can say is that in time you adjust because you have to, it is the only way forward. You will gain much support on this website, it helped me a good deal and in turn my son.

Thinking of you!

David

Edited by Dave Bishopstone, 10 June 2009 - 08:59 PM.

[E-DOG]

Hi mom,
Seems so few have an understanding of what goes on with a SCI. Quite frankly, not many of us out there so it doesn't get that much publicity. More people die from fingernail cancer each year than get their spinal cords injured. Bout all you can do now is be there for your son. a strong support system is what will help get him through all the fear, confusion pain etc. Rehab and aclimentation to a whole new life will be slow and painful. Be patient and he'll come through just fine. Welcome to the site and remember, any question is a good one.
E-dog

[Texas Angel Ang]

Welcome to one of the best SCI sites! The support system here is amazing I wish I would have found it right after my accident. Like everybody has said, just be there for him and like E-dog said, any question is a good question!

You and your family are in my thoughts and prayers!

[ClaraTaylor]

You really have found yourself amongst so many supportive people here, and I hope so much that your son starts to feel more comfortable soon.

[tessa]

Hi Sean's mom,

sorry to hear what happened to your son!
I hope that his fever went down and he can slowly slowly breathe on his own!
There will be a lot of hardship in front of you but you have found a good site for guidance and support.
I wish I had found this site directly after my brother's injury, it took me some 9 months to find it
It may sound a little flat now but everytihng will become easier with time. Just hang in there and try to
give your son as much strength and motivation as possible.

[Sean's Mom]

sweeper, on Jun 10 2009, 02:55 PM, said:

Hi Sean's Mom,

We went through the same thing with our son a little over a year ago. Be brave! I'm not going to say it gets better, but as time goes you will learn a whole new vocab and understand how things work and how to cope with them. You have found the best place to learn, ask questions and just pour out your heart. The people here are amazing.
V

What happens when he comes home? Noone has told us what to expect? Will he need 24hr supervision?

[CR_L1]

Hi again mom,
Slow down don’t jump the gun, no one can give you answers to your questions yet & probably not for a while. That is until everyone knows how your sons recovery is going.
How is the situation so far?
Best wishers
CR

[Sean's Mom]

CR_L1, on Jun 19 2009, 04:27 PM, said:

Hi again mom,
Slow down don’t jump the gun, no one can give you answers to your questions yet & probably not for a while. That is until everyone knows how your sons recovery is going.
How is the situation so far?
Best wishers
CR

UGH it is sooooo slow. He las lung issues. They are rotating him from back to belly. Hours off of his back in an effort to clear his lungs. Called "perming?" My son is big guy. This is difficult to see. Changing the vent tube again today or tommorrow. This gets scarier every day instead of better. His fever was 106.2 Friday night. I think they found the bacteria causing that and has been much lower since. Reading them at this point is so hard. I dont know wether or not to be scared scared or just scared.

[CareMomOH]

Hi Seans Mom,

I'm a mom too. Our son was injured last Aug. His is a lower injury but I felt the same way as far as not realizing what SCI's had to adjust too. But adjusting is what it is all about. I will pray for you and your family. Hang in there and just take it a day at a time at this point. Calming voices, gentle touches and lots of long slow deep breathes for everyone! Take Care,

Sue

[wheeliebear75]

Hi Sean's Mom.

Sorry to hear of your son's accident & of his subsequent infection. I know it is a horrible thing to have to sit & watch. I'm sorry that there aren't more certain answers. But even if you find 5 other people with the same injury level as your son the odds are they'll all have somewhat different outcomes. Now that they know which bacteria it is they can give him an antibiotic that is more specific to that particular strain. I'm sorry that often you end up taking 2 steps back & only 1/2 a step forward especially in the beginning. But the 1st few weeks are the roughest in many ways & this sort of thing having to fight off infections or other complications is just something that although we can't get around them......we can get over them.

When Christopher Reeve was 1st injured there was quite a few articles in papers or bits on the news about SCI in general. But yes although most have heard of spinal cord injuries few know much & that is even including a startling number of people in the medical community.

You know maybe some of that charity work you've done could come in handy in that you have contacts that might be of assistance to your family personally as well as the SCI community as a whole. We've all got sisters, brothers, children & other family and you never know who may know somebody or be related in some way to someone who has suffered SCI or some other illness/injury that could become a supportive person & enough people who care can be a force to be reckoned with.

[Sean's Mom]

It has been 6 months since Sean's accident. I feel I owe you all an update. Many of you gave me encouragement at a really difficult time.

Sean ended up in ICU for 4.5 months. He was on the vent for four of them due to lung issues. He made it to Rehab in October and is expected to come home in January or February. He developed class IV pressure wounds in the ICU. This keeps him in the bed 22 hours a day. He has lost 100lbs but has not lost one very important thing....he has hope. Thanks to all of you that comforted me in the early days. This website has been a valuable resource. It will be difficult as the holidays come knowing Sean will still be away from home trying to recover.

Hope you all are well.

Seans Mom

[Tetracyclone]

Sean's Mom,

i never heard of anyone being in ICU for 4.5 months. You have endured something so stressful, so heartrending that few of us even here can understand. Sean is quite a fighter and he clearly knew that his loved one's want him to stay in this world, no matter what.

I salute your family, Sean, and wish I could deliver chicken soup daily. Suddenly my own trials seam light, so I will use the extra energy to pray for you all.

Pat

[MxDisasterGrl]

hey mom,

I just read all the posts....and you have my deepest sympathies. I will also be praying for sean and your family. He really is a trooper and i'm know w/out knowing him that you had a huge part in that. It's our loved ones that make everything we go through easier on us. So long as they let us know that it doesn't matter to them the outcome so long as we are still around, somehow our world isn't so tragic. This is coming from someone whose parents both left her on her own. Had i not been a mother of two, i know for sure even against my own religion i would have attempted suicide. I still don't have a "family" other than my two 'lil ones and it pains me and my children everyday. Not knowing what it was that made them so upset they would leave me. Or was i going to be too much trouble? I don't know, but i do know that i too would like to salute you for all you've done. Hang in there! It's going to be a long, hard journey for you ALL. Just keep in mind you're not alone. We are all here to support and sometimes be supported ourselves. You're doing a great job!

Kudos for even getting online in the first place and researching, not one person i know did that for me. And honestly they don't care to even know what i'm going through...you're more appreciated than you know....

hang on to hope,
keep love and faith,
and thank god daily for the little things we have...


xoxos
april

[sweeper]

Hi Seans Mom,

I was thinking about you and you family. How is Sean? Has he made it home yet? My son has been home for almost a year and half so if there is any help or advice that I can give just send me a mail.
Keep strong and smile...... its sometimes all we can do to help them.

V

[Sean's Mom]

Thanks for all the kind words. An update, Sean came home in March. After almost 5 months in teh trauma center, then 5 months in rehab. He finally came home. He came home with the trach, which was disappointing, but none the less he is home.

We found a good caregiver so we can go to work. She is good but not sure how long we can afford it. Sean is in great spirits and hopeful. He I am not sure how or why he is so positive. On the other hand, I am greatly depressed by the whole situation. I am stuck in doom and gloom and dont know how to get out. We work all day then are caregiver by night. I feel like I do not have a right to complain ( my body is fine) but just like Sean, our mobility has come to a screeching halt.

Anyone have skin issues like folliculitis? He's been having a bout with it lately.

Hope every one is doin ok.

[Tetracyclone]

this is great news. It always feels impossible at first, but in time your lives will improve if you can keep Sean healthy.
We have friends whose son lives with a trach. He is ambulatory, has had the trach since he was born, and is now 21. naturally they said he would be dead within 2 weeks...

Edited by Tetracyclone, 17 June 2010 - 11:48 PM.

[jenny407]

Sean's Mom,

Thanks for the update. I know a bit from my MS friend what it's like.
I wish you all the energy, hope and strength that you need right now. The fact that your son is so positive is certainly in part because of all the support you all give him. Don't forget to take care of yourselves (the caregivers). This is very important, too.

I'll be thinking of you and praying for you.
All the very best,
Jenny