[JRM09]

Hi everyone. My nephew had an accident (fall) and he broke C4. He is paralized from shoulders down and is using the ventilator in the ICU since the day he had the accident. It is now 6 weeks he is in ICU and had a lot of complications, particularly in the lungs. I would really appreciate if anyone can help with information about similar injury and how long to stay in the ventilator and other type of problems.

He can not eat by mouth (difficult in swallowing), they tried to feed with a tube directly in the stomach, but had other complications. Now he is fed by IV only. He is so strong and wants to live and out of ICU. He said he dreams of being able to eat again and get off the ventilator. It is so sad to see him like that.

Thank you in advance for any information.

[Doug]

Vents are tricky it all depends on his body regaining function of the diaphragm “the muscle responsible for breathing”. I’m a C-5 but was on the vent for 4 weeks. I know this is a really trying time for you and your family but only time will tell how he will progress. It took me a long time to re-learn to swallow without choking and I wish him the best.

Doug

[JRM09]

Doug, on Jun 27 2009, 10:40 PM, said:

Vents are tricky it all depends on his body regaining function of the diaphragm “the muscle responsible for breathing”. I’m a C-5 but was on the vent for 4 weeks. I know this is a really trying time for you and your family but only time will tell how he will progress. It took me a long time to re-learn to swallow without choking and I wish him the best.

Doug

Doug, thank you for your information. We are hoping that my nephew get out of ventilator as soon as possible, but I have heard of cases that stayed for months, not weeks. As a curiosity, his name is Douglas, he is 27. Coincidence. Thank you again for taking the time to answer my post.

[boduke]

My boyfriend is a C4/C5 complete and he was in the ICU for 33 days and another 2 months in rehab. In total he was on the ventilator for 2 months. He had complications too when he was in the ICU (his trach dislodged and they had to re-vent him and put his chest tubes back in b/c he lungs collapsed.. again). Once he got out of ICU and to his rehab center was when he noticed a difference. I think they had better treatments and being able to get him up and out of bed, moving in therapy I feel did him some good too. He was slowly weaned off of the ventilator, but luckily he made it. Tell your nephew to stay strong and I wish him the best!

[JRM09]

boduke, on Jun 28 2009, 06:03 AM, said:

My boyfriend is a C4/C5 complete and he was in the ICU for 33 days and another 2 months in rehab. In total he was on the ventilator for 2 months. He had complications too when he was in the ICU (his trach dislodged and they had to re-vent him and put his chest tubes back in b/c he lungs collapsed.. again). Once he got out of ICU and to his rehab center was when he noticed a difference. I think they had better treatments and being able to get him up and out of bed, moving in therapy I feel did him some good too. He was slowly weaned off of the ventilator, but luckily he made it. Tell your nephew to stay strong and I wish him the best!

Hi Boduke! Thank you for the information. I wish my nephew is out of the hospital as quick as your boyfriend. This is all he wants. Yesterday I got news from his father that there is a pneumonia and high temperature again and new antibiotics are being used. I pray eveyday for him.
All the best to you and your boyfriend.

[tessa]

Hi,
am sorry to hear about your nephew, I hope he will get better soon and be able to breathe without the vent! Good luck to him and his family!
My brother is C5 and was injured when he was 25. He was lucky to only be on the vent for 2.5 weeks.
As Doug said, it all depends on how fast the body can regain some control over the diaphragm again.
Do the doctors or nurses do any breathing exercises with him?
My brother stayed in rehab for 6 months after initial ICU stay. It is a long time but I'd say that the longer he can stay in rehab the better.
There is so much new to learn.

[JRM09]

tessa, on Jun 28 2009, 05:57 PM, said:

Hi,
am sorry to hear about your nephew, I hope he will get better soon and be able to breathe without the vent! Good luck to him and his family!
My brother is C5 and was injured when he was 25. He was lucky to only be on the vent for 2.5 weeks.
As Doug said, it all depends on how fast the body can regain some control over the diaphragm again.
Do the doctors or nurses do any breathing exercises with him?
My brother stayed in rehab for 6 months after initial ICU stay. It is a long time but I'd say that the longer he can stay in rehab the better.
There is so much new to learn.

Tessa, thanks for your words. My nephew is doing the exercises to regain control, but the complications end up in the way. But we are confident that he will recover. It will be a true blessing when he is out of ventilator and out of ICU.
All the best to your brother!

[mic]

Hiya

How are things with your nephew now?

I had my injury 10 yrs ago when I was 19, I have a c4/5 complete injury. I was vented then got pneumonia a week after my injury. I was vented for 9 weeks (part of my diaphram function returned whilst using different breathing exercises through the vent ), then I spent a further 5 weeks with the tracky in until i could blow hard enough (which is still a really weak blo, I cant cough) that dr.s considered it safe to take it out. From the minute I was injured I was asked, begged, threttened, pleaded with to eat! but i simply could not swallow past the tracky without choking and this didnt seem to register with the nurses they were sure I was making it up! I was sick of hearing 'well everyone else can eat with a tracky in"), I drank enough milk shakes to keep them from putting the food tube back in. I didnt eat until around 3 months later & I was VERY thin 6-7 stone, I was 14 stone muscle bound boy when I had my accident. At this point I went to rehab and was surrounded by lads (and a couple of girls) with the same / similar injuries as myself and I must say it was this companionship & being with others who truly understood exactly what I was going through that simply made me forget the tormenting thoughts in my head that had been there from the start (the feeling of non-understanding, lonelyness, you are the only person who is experiencing this). With in a few weeks I was GETTING FAT, lol! and going along my bussiness in rehab just like everyone else there I was in rehab 1 year 2 month, and although I hated being in hospital, being around all my friends in the spinal unit (we were all in around a year, people dont seem to be in hospital long nowadays) is the best memmories I have. We all had a right laugh together, and got up to all sorts of trouble plus we were there for each other on down days, I still talk to most of them through facebook now

So that is my little story, which probably is no help to you, but just incase you can take something from it I thought Ide tell ya I hope I havnt bord you to death And I hope everything is ok at your end.

Company & fellow spinal injury matez are the best way forward in my expearience (and learning to do something, ANYTHING, for yourself!) thats why sites like this one are excelent

Keep strong
Mike

[Texas Angel Ang]

I broke my C1 C2, had pneumonia and my left lung was collapsed, like everybody else has said only time will tell. I was on the ventilator for 8 months, of course my injury is way higher and nobody really expected me to be able to get off of it.

Continue with the exercises, they help in the long run and from what it sounds like he is not giving up which always helps !

Keep us posted and tell him he already has a support group

[JRM09]

mic, on Jul 2 2009, 10:11 AM, said:

Hiya

How are things with your nephew now?

I had my injury 10 yrs ago when I was 19, I have a c4/5 complete injury. I was vented then got pneumonia a week after my injury. I was vented for 9 weeks (part of my diaphram function returned whilst using different breathing exercises through the vent ), then I spent a further 5 weeks with the tracky in until i could blow hard enough (which is still a really weak blo, I cant cough) that dr.s considered it safe to take it out. From the minute I was injured I was asked, begged, threttened, pleaded with to eat! but i simply could not swallow past the tracky without choking and this didnt seem to register with the nurses they were sure I was making it up! I was sick of hearing 'well everyone else can eat with a tracky in"), I drank enough milk shakes to keep them from putting the food tube back in. I didnt eat until around 3 months later & I was VERY thin 6-7 stone, I was 14 stone muscle bound boy when I had my accident. At this point I went to rehab and was surrounded by lads (and a couple of girls) with the same / similar injuries as myself and I must say it was this companionship & being with others who truly understood exactly what I was going through that simply made me forget the tormenting thoughts in my head that had been there from the start (the feeling of non-understanding, lonelyness, you are the only person who is experiencing this). With in a few weeks I was GETTING FAT, lol! and going along my bussiness in rehab just like everyone else there I was in rehab 1 year 2 month, and although I hated being in hospital, being around all my friends in the spinal unit (we were all in around a year, people dont seem to be in hospital long nowadays) is the best memmories I have. We all had a right laugh together, and got up to all sorts of trouble plus we were there for each other on down days, I still talk to most of them through facebook now

So that is my little story, which probably is no help to you, but just incase you can take something from it I thought Ide tell ya I hope I havnt bord you to death And I hope everything is ok at your end.

Company & fellow spinal injury matez are the best way forward in my expearience (and learning to do something, ANYTHING, for yourself!) thats why sites like this one are excelent

Keep strong
Mike

Mike, Thank you so much. You have no idea how you helped me and my nephew. It seems that your first weeks were as hard as his, and it gives us much hope that although it can take long, there is hope to recover! Today, Jul 2nd the docs were to try taking him from the big vent to a portable one - the say bipap, which seems to be a good sign that they are thinking of moving him out of ICU to a regular hospital room. He had no temperature the past two days, so we are also happy for that.
You are so right, we need to learn a lot and this site is a tremendous help! Thank you and thanks to everyone who is providing info.

God bless you all!

[JRM09]

Texas Angel Ang, on Jul 2 2009, 07:45 PM, said:

I broke my C1 C2, had pneumonia and my left lung was collapsed, like everybody else has said only time will tell. I was on the ventilator for 8 months, of course my injury is way higher and nobody really expected me to be able to get off of it.

Continue with the exercises, they help in the long run and from what it sounds like he is not giving up which always helps !

Keep us posted and tell him he already has a support group

Hi Angela, Thank you! As I said to Mike, this is so valuable information. So much we have to learn about SCI, treatment, recovery, tools, and now fashion with you! My nephew Douglas will be so happy to know about his new support group. As of now he can not come and check himself. Hopefully he will do in some time.

Thank you and God bless you!

[DustyP]

Hi there,

sorry to hear about your nephew but it sounds like he's lucky to have someone like you that's willing to do the research to give him possible chance for recovery. I have a C4 complete injury that occurred five years ago now. I was on a ventilator for just over three weeks, and had a feeding tube in for an additional 2 to 3 weeks after that. Those are definitely some trying times and battling infection is just part of the territory of having foreign objects in your body.

As others have said, only time will tell. Everyone respond very differently, and from what I've been told it partly depends on the physical condition of the individual prior to the injury (and of course the severity of the injury itself). Prior to my accident I was a very healthy, non-smoking, extremely active individual who was engaged in sports and things like that that kept me in shape. I don't know the scientific facts or if the doctors were just feeding me a bunch of crap, but they said that that was the reason I was able to get off the ventilator so fast. Don't be discouraged though if you find that it is taking more time than you would like (although I'm sure that amount of time has already passed). I was in rehab with an individual who had a C4 injury as well and he was on a ventilator for several months and then one day they just found his breathing was getting better and eventually worked his way off of it.

One thing I can tell you about having a feeding tube is that it's not pleasant getting off of it. One of the first things I can remember eating with some canned fruit that had the distinctly awful taste to it. This is because the taste buds developed a type of reaction from not being used and it takes some time to get a normal sense of taste back. That will come back steadily I would expect within 2 to 3 weeks of removing the tube.

All the best wishes and feel free to contact me if you have any direct questions.

This post has been edited by DustyP: 03 July 2009 - 04:48 AM

[JRM09]

DustyP, on Jul 3 2009, 05:47 AM, said:

Hi there,

sorry to hear about your nephew but it sounds like he's lucky to have someone like you that's willing to do the research to give him possible chance for recovery. I have a C4 complete injury that occurred five years ago now. I was on a ventilator for just over three weeks, and had a feeding tube in for an additional 2 to 3 weeks after that. Those are definitely some trying times and battling infection is just part of the territory of having foreign objects in your body.

As others have said, only time will tell. Everyone respond very differently, and from what I've been told it partly depends on the physical condition of the individual prior to the injury (and of course the severity of the injury itself). Prior to my accident I was a very healthy, non-smoking, extremely active individual who was engaged in sports and things like that that kept me in shape. I don't know the scientific facts or if the doctors were just feeding me a bunch of crap, but they said that that was the reason I was able to get off the ventilator so fast. Don't be discouraged though if you find that it is taking more time than you would like (although I'm sure that amount of time has already passed). I was in rehab with an individual who had a C4 injury as well and he was on a ventilator for several months and then one day they just found his breathing was getting better and eventually worked his way off of it.

One thing I can tell you about having a feeding tube is that it's not pleasant getting off of it. One of the first things I can remember eating with some canned fruit that had the distinctly awful taste to it. This is because the taste buds developed a type of reaction from not being used and it takes some time to get a normal sense of taste back. That will come back steadily I would expect within 2 to 3 weeks of removing the tube.

All the best wishes and feel free to contact me if you have any direct questions.

DustyP. Thank you! The feeding tube is something that really bothers him. But he has shown patience. The exercises to re-learn swallowing continue. Thanks again for sharing information. All the best to you.

[JRM09]

Hi everyone.

Some quick updates from my nephew. He was moved today to a regular room in the hospital, not in ICU! Hopefully he will be better there. His parents are with him tonight. Thanks God for another important step to recovery! He is doing well with the portable vent. And no temperature today.

I have another question to all of you, we heard in Brazil about a clinical trial with a German injection Disci/Rhus toxicodendron comp. that supposed
to help re-gain some sensitivity (arms / legs) . I quickly searched on the web and found that it is a trial for a medication for low back pain. Could not find any reference as to be used for SCI.

Has anyone here heard about it? Thanks.

[JRM09]

Hi everyone.

It is now four months since my nephew's injury. This week he has been evaluated by a doctor as a C4 complete. (we were not sure about complete / incomplete til now...)

He is still on vent (portable one). Good news he is able to swallow and started eating some small portions of soups (like baby food...) for the past two weeks.

My question to you now is about recovery experience for c4-5 complete. If you had similar injury, did you regain some of arms/hands movements with rehab or any treatment?

Thank you all for your valuable information.

[tmcph]

JRM09, on Sep 13 2009, 09:12 PM, said:

Hi everyone.

It is now four months since my nephew's injury. This week he has been evaluated by a doctor as a C4 complete. (we were not sure about complete / incomplete til now...)

He is still on vent (portable one). Good news he is able to swallow and started eating some small portions of soups (like baby food...) for the past two weeks.

My question to you now is about recovery experience for c4-5 complete. If you had similar injury, did you regain some of arms/hands movements with rehab or any treatment?

Thank you all for your valuable information.

i'm c 5/6 complete, it took me 3 months before i got any movement back. my doctors said that my spinal cord was swollen & as the swelling goes down i would get better movement/feeling. they then moved me into rehab & my arms came back quick(3 1/2 months). i'm not sure if it was from the rehab or the swelling though.

hope this helps some

[rollingpix]

JRM09, on Jun 27 2009, 04:34 AM, said:

Hi everyone. My nephew had an accident (fall) and he broke C4. He is paralized from shoulders down and is using the ventilator in the ICU since the day he had the accident. It is now 6 weeks he is in ICU and had a lot of complications, particularly in the lungs. I would really appreciate if anyone can help with information about similar injury and how long to stay in the ventilator and other type of problems.

He can not eat by mouth (difficult in swallowing), they tried to feed with a tube directly in the stomach, but had other complications. Now he is fed by IV only. He is so strong and wants to live and out of ICU. He said he dreams of being able to eat again and get off the ventilator. It is so sad to see him like that.

Thank you in advance for any information.

I'm a C5-6 Quad was paralyzed neck down for three weeks and vent dept. for two months. The steroids should start working and his lungs(hopefully) will kick in.

Keep fighting

[JRM09]

Thank you Tmcph and Rollingpix for your answers.

Want to share with everyone here that my nephew's breathing has improved a lot in the past week. He is able to breathe up to 3-4 hours without the vent!

[JRM09]

Hi everyone. Long time I do not post here.

We are very happy, my nephew went back home yesterday, completely off the ventilator, after nearly 6 months in hospital.
He also started having some minimal voluntary moviments on his fingers during the past month. We thank God for that and are really hopeful that he might be able to recover more movements, when he starts more intensive rehabilitation therapies hopefully this month.