Hi everyone,
My 31 year old son was injured in a car accident on June 4,2008. He had multiple life threatening injuries in addition to the sci. He had a torn aorta which required a graft being done at our local hospital and the next day he was flown by helicopter to Baltimore to Shock Trauma.

There we found out about the T5 complete sci and a punctured lung, broken ribs, torn rotator cuff and shortly afterwards, a clot thrown down from the aortic graft that killed off a large portion of his small bowel that required a resection. He did have enough left to reconnect thankfully but had 5 major surgeries in the first week. He also got pneumonia and picked up some kind of bug while in shock trauma. He also has a paralyzed vocal cord from being intubated that had to have a surgical procedure done so he could swallow and talk. The first month or so he was in a drug induced coma and on TPN and tube feedings. When they allowed him to wake up he was put in a chair for several hours a day due to the poor condition of his lungs. This caused 2 very large pressure sores in addition to everything else that he had to deal with.

He was in shock trauma for 4 months before he was finally able to go to rehab. There he was allowed out of bed only 2 hours a day for therapy and then back to bed. So that caused another pressure sore on his sacrum. The original 2 were so deep you could put your fist in one of them. The one on the sacrm did not get deep.

He was released after 2 months not being allowed to transfer himself although they showed him how as well as transferring himself from wheelchair to therapy table.

At home, the home care nurse that came put a rubber donut under the sore on the sacrum and that caused a large bruise that opened into a sore. The boots they had on him caused one on each heel. The heels are scabby looking but not deep. He is on a wound vac now and they are doing great. One had an infection that was treated with iv antibiotics and it too is getting better.

My reason for going through all of this is because I am constantly getting mixed messages from everyone and don't know what to do or who to listen to. He gets out of bed using a hoyer because we were told he should not try transferring out of bed with the sores. Then someone else comes and says why isn't he transferring? One says keep him in bed until the sores heal and another one says why isn't he up in his chair? One reason is after 3 months being home they can't decide what kind of chair to order him. The home care nurse says he has another patient hurt the same day as David and he is out driving already with pressure sores. Another nurse tells me she shouldn't compare any one patient to another one. This nurse has 12 years experience with sci and said he is still not a year post injury and still healing. Also, this other patient didn't have the other major injuries that my son did. Maybe if he only had the sci he would be doing more.

He has had problems with not wanting to eat which made him very weak and the doctor gave him something that he eats all the time now. He also had a bad spell of depression which he is being treated for as well. I think the good nurtition has helped in the healing of the sores too.

Can someone please help me understand what he actually should be doing now? I am hopeing he will do better when he gets a wheelchair that is made for him and that he is comfortable in. He had been having in home ot and pt but since he has the sores they stopped that for now. I know he can be more aggressive in using his arms more fully as that is where he will need his strength to be able to transfer but then again for a few months his shoulder hurt so bad where he had the surgery for the rotator cuff but that seems to have gotten better finally.They wanted him to go back inpatient rehab and he refuses to. He was in the hospital for a total of 6 months and just can't deal with the idea of going back again. If he gets more mobile he can go to outpatient rehab and he will do that.
I am sorry this is so long but I am getting so frustrated not knowing what to do and feeling like nothing I do is right for them. I finally told them to get together and make up their minds what I am supposed to do for him. Anyway, any hints on getting him moving more and being motivated will be appreciated. I appreciate your listening to me ramble on but I really need some help.

DavesMom, Diane

Hi Diane...First off, i'm sorry to hear about Daves accident, thats a horrendous series of issues to go through apart from the SCI itself... I'm glad you decided to come here, you'll quickly find that apart from the information you'll find on the site itself, everyone here is very in tune with SCI issues and we are all more than happy to help where we can!

We can all understand where Daves depression is coming from, we've all been there and unfortunately it is a critical process everyone has to go through post SCI. Just please let him know if he needs anyone to talk to, we are all here for him.

Now getting back to Daves pressure sore problem...You need to take this issue VERY seriously and keep him off them as much as possible!...Trust me, the last thing you want or need is those going septic, that could very easily put him back in the hospital for a long time!

As far as a wheelchair goes, that is something that has to be thought about a great deal beforehand. The wheelchair has to address a multitude issues besides basic mobility, proper support and posture being the most important. We can help you to hammer out the details as the time to order a chair approaches.

Anyway, welcome to the site! I hope we get to see you around often!

As a mother to another mother, I feel your pain in trying to help. I on the other hand, was the one who was injured and I found that having a peer come to your bedside so to speak helps immensely. Being able to relate to someone makes a huge difference. I recently helped a father get his son hooked up with people his own age. In a matter of weeks, he began taking care of himself, talking out his issues and being part of life.

Is there a Rehab center near you? They often can get you connected to someone willing to come out to the home. Not a counselor, just another guy who has a similar injury level. If they can't help you, give The Christopher Reeve Foundation a call. Here is the connect to their website. They can connect you to someone for sure. Hope is eternal, sometimes we just need someone outside the situation to show it to us. Best Wishes.

http://www.christopherreeve.org/site/c.ddJ...k.BDDB/Home.htm

Diane,
My dear it looks like you've been handed a real plate full. And Dave? Two plates plus dessert. I've yet to have a pressure sore but having talked to those who have, I'd say keep him off the wounds for a while. Let 'em heal a bit before the activity of rehab. Maybe some thing he can do in bed to keep his arms in tone. Thera-bands tied here and there to stretch this way and that.

That he was allowed to get the sores in a hospital setting doesn't say much for their nursing staff. The should have known better and kept a better eye on him.

I have less than 2 years seated so I can't help much but there are those here who know a whole lot about your son's condition. Please do not hesitate to come here for advice etc. You might try suggesting Dave do the same when he is able.

Welcome Diane, and Dave (by proxy) Things WILL get better but it's gonna take time.
E-dog

You were both dealt a very big blow with not only the SCI itself but all the other injuries and post-problems. Our thoughts will be with you both.

Even among those of us with "similar injuries", 2 people will almost never have the same exact outcome. There are no 100%s or guarantees and especially concerning issues with SCI & health.

There are different ways of doing just about anything. I would say that although you're getting conflicting information the nurse brought up a point......your son had more injuries than most, his was not limited to just the SCI.

The sores are VERY important to keep under-check. I think what they were meaning by telling you that transferring could be bad would be from accidentally tugging on the skin as he slides thereby opening up the sores further.

There are almost as many wheelchairs as there are cars; you'll need to have some more info before you can start picking out a make and model. And Santa Cruz Soul Surfer is absolutely right about a wheelchair being much more than just a mode of getting around, the wrong fit or type of chair can actually create pressure points and sores.

I hope you will both find a lot of useful information, and that your son will stop by & join us.

You're getting good consistent info here particularly in relation to giving top priority to properly healing those sores. You and your son have gone through an extremely difficult start and it'll be a great relief when he does reach that stage of being mobile in a chair.

The returning to hospital option shouldn't be totally dismissed. The stress while waiting for those sores to heal is hard not only on him but you and anyone else involved. I'm also concerned he is not getting ot or physio. Sure, he's limited at the moment but it is also critical he keep up his strength and flexibility. Are his legs, ankles and hips getting regular passive exercise?

Fored to rest in bed is no place for a 31-yr-old T5. If it means going back to hospital to get consistent and informed care to heal those sores then it's worth it. And I say that as someone who hates being in hospital.

Santa Cruz Soul, Califanna, E-Dog, Wheeliebear 75 and nomis,
Thank you so very much for your messages. I can not tell you how much they are appreciated. We have had some tough times with all the injuries Dave has had and it is hard not knowing what to do. I really do understand the issue about not transferring with the sores but then someone else comes along and says why isn't he doing it. They stopped coming in home for ot and pt because the insurance company doesn't want to pay for that when he is in bed.

Thankfully, the wounds are getting better and he has an appointment with a wound care center this Wednesday. He will be seen by them on a regular basis now and hopefully along with the wound vac we will get rid of these things. Several people have mentioned how the nurses should have known better than to let him get such bad wounds. I just figured they had so many other issues to deal with and the other things took priority. He was not expected to live and I am thankful every minute of the day that he had the strength to survive.

I am glad to hear any information anyone can give me and thank you for your support. I know Dave will want to get on here when he can and talk to all of you.

DavesMom, Diane

You can at least ask the OT & PT for some help as far as exercises that you can help him do. Although you are not an actual OT or PT you can however still help him (fallowing the advice of the Dr. and other medical staff) with doing a lot of range of motion exercises, if he does not move or get moved the joints will lock up and he may create additional problems with getting on the road to mobility and independence. You still have to be very mindful of the sores that still exist but there is no need for him to regress and loose what muscles he does have. Sometimes it is a matter of which is more important......although you need to make sure he does not loose muscle tone he can work on that part AFTER the wounds are healed up; the other way around doesn't always work.......if he concentrated only on transfers and such then he could end up with worse wounds........and then he'd be back in the hospital.

When the wounds are healed then you can concentrate on building up his physical stamina......until then just take each day as it comes. Be sure and set time aside for yourself; you're not able to help nearly as much as you can when you are well rested and "have fully charged battery"........bubble bath or a good book to relax and take care of you.
(When I 1st came home my Mom had my Aunt come over twice a week so she could soak in a bubble bath for an hr or so......helped my Mom deal with the stress.)

Well said. You need to give yourself that little time off, so you can be well enough to help. It was a hard-learned lesson for my partner, who wouldn't listen to advice and ran himself into the ground trying to look after me in the early days.

Time for myself? What is that? But, I know you are both right. I have been so concentrated on doing for David that I just didn't think of anything else. I am starting to feel better now that I see him gaining strength and the wounds healing. I am actually thinking of seeing a movie one of these days with my daughter who also needs time off from helping me with her brother. He has been our main focus and seeing him do better is worth it. I am anxious to get the wounds gone so he can get more phsical and do more for himself. I spoke to the case manager and she is checking into ot for him again at home. Wound care said he must stay in bed and when he gets the wheelchair that was ordered for him he can be out of bed only an hour or two maybe 2 times a day. Hopefully, by summer we can be out and about having a little fun as a family.
DavesMom, Diane

My daughter was shot two years ago and is now a complete T-9. Her depression/anger lasted until she had been out of the hospital a year (so fifteen months after the shooting), but now she is in wonderful spirits (most of the time). She also got a pressure sore in the hospital because of her internal injuries and subsequent surgeries--she couldn't be turned properly for several weeks because of chest tubes and her incredibly long incision from the initial surgery.
At home, we have a bed with a temper-pedic knock-off mattress in the living room so she can lie on her stomach and hang her feet over the edge of the bed (to avoid pressure sores on her feet); this helps with the pain in her back and helps with her stretching. Something like that might also help Dave--sort of being in bed but not really.
Life does get so much better--my daughter has gained so much strength in her arms and we've found good PT/OT for her.
Take care of the pressure sores first, then things will pick up. And take care of yourself--the first year or two are hard enough without a good support system.
Susan, aka Andrayla's Mom

Hello,

I am very sorry to hear about your sons accident. Much of his injuries seem to be the same that my father has incurred six months ago, he still remains in ICU. My father too has a pressure ulcer, another has healed. The best wheelchairt that they advised for us is the ROHO cushion chair. My father had two on his tailbone but always lifted with a lift. Just insure that the properly place him in the lift so there is little rubbing as possible on the sores.

Hope this helps.

Maria Rosa

Wow,
What a bad day that was. Jan, 04,2008.
I will keep my story short, but wife, daughter and son were in a head on the same day around 10:20am. (going to fix a paint chip on the hood,,,go figure) My son (7) had it the worst with a T9 incomplete. Little guy is light compared to an adult so pressure sores are not yet an issue, but for the info I have taken in from Dr's , Nurses, Therapist and this webby thing here...NOT a subject to play with. We have him sleep on the other side every other night and on his belly when he can. The nurses/ doctors should really have paid better attention, but the past might as well be a million years ago.
Son used the rubber bands to build strength up while in two different hospitals and still uses them at therapy. Great tools for keeping what is there, there. This sight is great for info and just reading a little into the future with others stories is very empowering.
Hope to hear that all is better soon......
rs isaiahs dad

Diane,

I am very sorry to hear about your son’s accident! That's the life and now he has to deal with it as well as the whole family. What he needs now the most is support and carrying from his family and friends. Never show sadness and pity in your eyes and teach the others to be careful at least for the first year or so.

Regarding his pressure sore, it is probably caused by nurse staff negligence. SCI patient MUST be turned at least every hour from back to sides! I was in hospital for 2 years and spent in bad 7 months full time, but never had a pressure sore. Please keep him of his sore as much as possible until it heals.

Wish you good luck guys!

P.S. You as a "team" have to be strong and hopeful, cause life in wheelchair can be an awesome adventure! He will learn how to appreciate the life and also learn how to enjoy every bit of it. - let him know that!

Hi,
I think with the pressure sores starting in the first place, sometimes they have to be ignored as what overrides everything is the need to keep the patient alive. Keeping him elevated in the chair would have helped with preventing pneumonia but of course the pressure sores would have been made much worse. Pressure sores start when circulation stops to an area, the flesh or skin then becomes compromised and is damaged dies. Basically the blood is being squeezed out. People without SCI can feel if their butts are getting sore and move their legs and the muscles help move the blood in and out of the area. Keeping the pressure sores dry and his weight off them is therefore paramount.

Just remember though that just as the pressure sores have started on his backside, they could also start on his hips or over other bony areas so turning him every hour 24/7 is very important. The reason they don't want him transferring himself is the sliding can damage the skin further so rolling is better. Sounds like he could be a little depressed. From personal experience I know that is when we are least likely to help ourselves so it should be stressed to him that he is not going to magically get better. The only thing which will happen is that he will get worse, not better if he doesn't put his best at this stage. I had multiple injuries and major problems with pressure sores so I understand the issues and what you are going through, as would my Mum who was my primary caregiver once I was discharged from hospital.

Sorry Davesmom, I was discussing with my wife your son's issues and she pointed out that the date was June not Jan. I thought it was the same day as our sons. Regardless, try the Caringbridge.org website for some personal therapy. I used it for the months we were in with my son and it was sooooo theraputic to actually put my feelings out there. Kinda like letting them go ..... a little. Making time for yourself is crucial. If you are not well, it is hard to be a caretaker for very long.