Worried about my son, TBI survivor

[TBIcaregiver]

Last December my 19 year old son was a passenger which collided with the central reservation on the motorway. My son was in a coma for several weeks. We were told from the start that he may not survive due to the horrific injuries sustained. He suffered skull fractures, bleeds to the brain, bruising to the brain, open fractures and various other injuries. Miraculously he survived. He is experiencing extreme fatigue and just a walk from his room to the kitchen will exhaust him. It is a struggle getting him to his hospital appointments because he is exhausted and attending an appointment wipes him out for days afterwards. Obviously he has many other symptoms but the biggest one is the fatigue. I am wondering if anyone has been in a similar situation and can share their story or give me some hope or advice. I feel helpless right now.

[Sepsur]

yes, yes, yes. After 57 day coma, a further 33 days in ICU & 30 days in hospital - I came home. Getting dressed in the morning set me back to bed for 2hrs I was sooo exhausted.

Later we set up mobility sessions to help people rehabilitate - it’s all ( safely) on line

cc-sn.org/exercise-group

I needed to rebuild my strength & stamina with organised sessions - it didn’t happen of its own accord. Coming from a position where I couldn’t walk, talk or sit up, my job is physical which I do everyday - I rock climb as a hobby.

[TBIcaregiver in reply to Sepsur]

Thank you so much for this. He is on a waiting list with the brain injury rehabilitation team but we dont know how long that will take. He has had to give up his studies for now. I will get him to watch the video to the exercises, thanks for sending me the link

[Sepsur in reply to TBIcaregiver]

he can join the session from start-up to advanced & then get on with his life 😊

[Back_to_reality]

This is completely normal in my experience, even if it's worrying. I was in a coma for three weeks in Summer 2021. I lost 10 kg, and I'm not that big to start with. I couldn't stand on my own two feet at first. But I pushed myself every day and within a week I was able to walk around the ward, up and down stairs, and they let me go home.

I was told to rest, but I sat on the sofa and thought, I'm not just going to sit here. It was a lovely summer's day, and I was lucky to be alive, so I thought I'd try and walk down to the end of the street. I was fine, so I thought I'd go a bit further. It was only when I was half way round the block that I realised I was absolutely knackered. I really had to push myself to get the rest of the way round and back inside.

But I felt better for it. I pushed myself bit by bit after that. After a few weeks I was able to cycle, so I persevered with that. It wasn't easy but I could feel myself getting stronger. After seven months I went skiing and managed that fine.

I'm 47. Your son's 19 so he shouldn't have any problem. Rome wasn't built in a day though, so if he's struggling with fatigue he needs to gently push himself. Going for walks will help. Eat well. But keep going.

There will be some days when he feels he's going backwards. Don't worry; we all have bad days, even when we're well.

Sepsur's sessions are probably a good idea. The important thing to realise is if you are knackered then you are pushing beyond your body's current capability. This is a good thing; it will build strength. Don't overdo it, of course, but do keep pushing, bit by bit.

I also found that pushing myself physically helped the mental side of things. Seeing progress really helped, and being tired helped me sleep more deeply and avoid some of the flashbacks.

[TBIcaregiver in reply to Back_to_reality]

Thank you so much for this. It's very informative and helpful. I showed my son your reply and all of a sudden he didn't feel alone. We will definitely take your recommendations on board. I keep reminding him he will get there and he has come through the worst. I think there's other things that are troubling him too. He struggles with his mood changes but I have to remind him that's due to the brain injury and will take time. He feels he will lose the people close to him because he is always tired which makes him moody. He is also hurt by the fact that the friend who was driving doesn't even ask him how he is. One step at a time x

[Back_to_reality in reply to TBIcaregiver]

You're welcome.

The mood changes are quite possibly from the sedatives he was given in ICU. In my case I had encephalitis (cause not proven but we have suspicions), so I didn't have any physical injury. And yes, the crazy place I ended up in, in my head, continued to haunt me for months afterwards. There are plenty of stories on this forum of ICU delirium. We are not alone.

It does go away. A good analogy is having a stinking hangover. You can try remedies or various hangover cures but the only thing that really works, is time.

Imagine that hangover, multiplied by about a million and you're close to the situation you're in waking up after a stint in intensive care. But even that first day, it reduces by half. Then half again. And so on. So perversely, even though your son is feeling pretty bad with himself at the moment, he should compare what he's like compared to when he was back in that bed, with the strange people all around him. Of course, we're all different, but I was in a crazy world in the ICU, and was desperate to escape. I ripped the needles out my arms. They put heavy mitts on me to stop me. I managed to get those off. I ripped the feeding tube out my nose. I tried to get out of the bed.

So if he's anything like that, and is able to look back to those few days, he'll see that he's improved a lot. But now, he's seeing more incremental progress. Each day may seem not much different from the last and some days will feel like going backwards. But he is improving, bit by bit. But he has to push himself. If you sit and wallow, you'll go nowhere.

One of my friends was in a car crash when he was 17. He spent 100 days in ICU and an entire year in hospital, while they tried to reconstruct his back. The scar is an inch deep and a foot long; he was lucky to pull through. He had to deal with the pain of such a serious injury, the ICU drugs, and a morphine addiction he developed during that time. Of course, this was nearly 30 years ago now, but he's absolutely fine. He had the benefit of youth, as does your son.

[TBIcaregiver in reply to Back_to_reality]

OMG this sounds just like what my son went through. The morning after the pope died, he was telling the staff and us that the pope was his "boy" and he had visited him the night before. He also was convinced someone was trying to sneak him out of the ICU!. He also pulled out his feeding tube, they had to sedate him and tape it in and told me he would not pull it out again because it would hurt a lot but he did it again. He even tried pulling his catheter out! He has no memory of the accident which is good tbh because the accident was horrific. Thanks once again x

[Back_to_reality in reply to TBIcaregiver]

I had to get the tube back into my nose while conscious. It was kind of like swallowing it, but through my nose, and all the way into my stomach. Not something I ever want to do again. I'm amazed I managed to be honest.

I am very glad I didn't touch the catheter. Cringing just thinking about it.

I hallucinated that my family had been murdered. It was not pleasant, but was an incredible relief when I was able to accept I had made it all up.

When discussing with the doctor months later, he told me that basically the drugs are a clumsy way of dealing with it. You need something to sedate patients as funnily enough the human body's not too keen on tubes being stuck down your throat and into your lungs. The sedative they give you is the best they have, but clearly the side effects on the mind are horrific.

I don't remember the ambulance, although my younger daughter, who was three at the time, cried her eyes out. Poor thing. I did get transferred between hospitals at one point though. My memory was being pushed through the streets of London on a stretcher with an angry mob chasing me. Crazy stuff. I do get the shivers still when I think about this stuff, but you have to confront it. It didn't really happen, as painful as it seems.

[TBIcaregiver in reply to Back_to_reality]

You've lived through the scary times, ur a survivor. Im so happy to hear you are doing better x

[micheve123]

Hi as others have said its normal for us that have been in icu. I struggled and when transferred to the ward I thought I couldn't walk at all I felt so weak even eating was an effort. But I could and once home the really work began. It was slow but got there in the end. 7 months later went back to work very tiring but got through it. It is about pushing yourself but baby steps. Good luck to your son and please remember to look after yourself as its exhausting for family members too 😊

[TBIcaregiver in reply to micheve123]

Thank you very much. Honestly it helps so much listening to stories from others that have been through something similar x