Traumatic Brain Injury

[MLake]

Hello, I'm new to this forum and I'm not sure if I'm posting in the right place but.... here goes... My husband suffered a 30 foot fall on 20th May this year (A climbing accident). He was airlifted 2 hours away and was placed in an induced coma. The sedation was switched off eleven days ago and he is still not awake. We have a 6 year old daughter and 1 year old son and I'm going out of my mind with worry. No one can tell us if or when he will wake up. The medical professionals are hopeful but that's it. I don't know what to prepare my children for. I have no idea how to sort my finances. I am hours away from being able to visit him. I'm wondering if I should go back to work... Is there anyone out there who has been in a similar position who could give me some words of wisdom right now. We are really suffering.

[MLake]

Thank you for taking the time to reply. He’s had several ct scans and a recent MRI scan which shows four small bleeds to the brain (consultants say this is often worse than one big bleed as the effect is global). He also needed an extra ventricular drain inserted to relieve the brain pressure although this has now been removed as he has stabilised. He’s opening his eyes spontaneously and is extending his limbs and that’s about it.

I hope your rehab is going well. I guess it’s early days for you too in terms of rehab recovery as we were told it could take up to two years to see the full effects of his recovery. Sending strength to you.

[TaIaV]

Dear M

My nephew's TBIs were not as traumatic as your husband's but I have some other experience with sudden major illness in the family. I am so sorry this is happening to you. The emotional burden is so large and yet there are so many practical things that domain your attention. Is there family or friends who can help? If so, I would suggest that you use them more than you want to. This may last quite a long time and the most scarce and critical resource in the whole situation is you. For this reason, I would suggest that you"outsource" as many tasks as possible to others. They may not do them exactly as you would, but what you need is time and moments of peace. Make a list of things that others can do for you so that you can be very specific when people say "let us know if there is anything we can do".

Finances. If you did not handle the finances, I hope that you can get someone to help you understand "what is what" with that. In particular, I would suggest having someone understand: 1. What bills need to be paid and when, 2. How long your savings can offset the loss of his income, etc. You do not need any more bad surprises. If money is going to become an issue, you need to know when and by how much. This, along with your work environment, can also help you decide when you have to go back to work and if you have to make any other changes in lifestyle or

What to Prepare For. It sounds most likely that you need to prepare for uncertainty for quite some time. If you search for questions similar to yours on this site you will hear many people who have gone through this saying that it is a long road and one that is quite unpredictable. For what it is worth, just today I read about a study that showed that when waiting for important news neither "hoping for the best" nor "preparing for the worst" were good strategies; they said that 15 minutes of mindfulness meditation led to be best emotional state among people waiting for important news. If you have never tried mindfulness, this may seem like the worst time to try to do so, but it does not have to be onerous. There are on line sources of guides to doing this. The major elements of this situation (his injuries and the pace of his ability to recuperate) are outside your control, so there is great value in keeping yourself in the moment rather than either longing for or in dread of the future.

It is good to hear that the doctors are hopeful. Your challenges feel monumental. We are weaken by such feelings. One step in front of the other. Don't avoid the tough parts but don't let them drag you down, either. You are a mother, which means that you have the strength of many. But remember that "strength" means accessing help as well as helping yourself.

I hope that something here is of help and that nothing I have said sounds insensitive. I wish I could be of more tangible assistance. All the best to you and your family.

Taia

[Hetty56]

I totally feel for what you're going through. My 22 year old son suffered a TBI in January following a car accident (black ice!). He was put into an induced coma and airlifted to a hospital an hour away. The sedation was removed after about 4-5 days but he remained in a coma for a total of 10 days. The post traumatic amnesia (which I didn't know about at the time) lasted for about 7 weeks after that and he's now making a good recovery.

During this time I coped by seizing on every little positive thing the doctors told me, or the tiniest thing that Sam did - that could have been something like squeezing my hand even though he wasn't conscious at the time, and taking that thought home with me. The doctors in his case were also hopeful but made sure I remained realistic.

I can only suggest that you take each day as it comes, try to take home with you one positive thing about each day (even though it might be a really tiny thing). Headway are also a really good resource. Call their helpline and just talk to them - they have a wealth of information and I think they can advise on finances. They also provide an emergency fund to help with financial concerns - they helped me with travel costs.

I wasn't able to access my son's bank, his insurance company or his emails. Being a 22 year old working in IT he had high on everything so I couldn't get past any of it. However, I found that by speaking to any of the organisations - banks, student finance etc, and explaining the circumstances they were extremely accommodating. There is a lot of help out there.

Please also take care of yourself - make sure you eat, drink and rest although it may seem impossible sometimes and, as I said, earlier, take each day as it comes.

My thoughts are with you xx

[MLake in reply to Hetty56]

Thank you Hetty56

[United99]

MLake, this is my husbands account but he asked me to reply to you. My husband was 33 in 2014 when he had a car vs lorry accident and was airlifted to QMC and was in a coma, he was also sedated and took several weeks after sedation and a tracheostomy was fitted before he had any version of response. What is your husbands GCS? My only piece of advice is don’t give up,this is going to be the toughest test you will ever face without any doubt. There are so many challenges ahead that will test you but you can do it! Your children will anchor you and on the tough days (if there is lasting TBI) you’ll need support and please ask for it, I didn’t- I’ve struggled and tried to do everything myself and sometimes things have just got a touch to much. If you want to email me (there’s so much more I would love to share with you) let me know and will send you my email address - my husband is very new to the forum so we haven’t really got our heads round it yet, but sending prayers for your husbands recovery, if the professionals are hopeful that’s the first step , look after you - don’t stop eating sleeping , seeing friends etc... I ignored all this advice and wish I’d not , take care x

[MLake in reply to United99]

Hello United99, thank you for replying. This journey everyone talks about is horrific. His gcs is currently fluctuating between 5 and 8. I took my 6 year old daughter to see him yesterday (it was his birthday) and he seemed to purposely open his eyes a few times when she was there. The dr said his scan shows diffuse Axonal injury which is very bad. I am so frightened about our future... I just have no idea what to do. my email add is [e-mail] and my name is Michele. Please thank your husband too.

[Richdp]

Hi M, I'm sorry you're having to go through this horrible time.

I'm a tbi victim myself. I had an accident in 2011 abroad, and was put into an induced coma because of swelling on the brain. I was repatriated to the UK whilst still in a coma, and was still comatosed for a further 2 weeks (6 weeks in total).

At the time of my accident my wife had not long found out that she was pregnant. My little girl is now 6 and we have a son who is 2 next month, so I realise how so very hard it must be for you right now!

All I will say is that the odds were stacked up against me, from the hospital in Bali, to the flight back to the UK. Even in England my family were told there would be a strong possibility I'd end up in a vegative state, and I proved them wrong.

I think I came through the other side due to the love and support I had from family and friends, and especially my wife for being there for me as much as she was.

Every head injury is different and it effects each individual differently, but I was young and quite fit at the time of my accident, and was told that could've contributed to my recovery.

I hope you find some comfort and positivity from this, and please keep us posted on how thing are going, although it can take time.

Stay patient, keep strong and look after you and the kids right now!

[MLake]

Richdp - thank you so much for your reply. Your story is amazing and I’m so glad that it all worked out for you guys. Your story gives me a tiny glimmer of hope, however I am tortured by the alternative and trying to advocate for Si and what he would ultimately want for himself, us and most importantly his children going forward. I have very serious concerns if I’m honest

[Richdp]

That's completely understandable! As hard as it is, try not to worry yourself sick! Try and keep any positives you do get from the doctors, and keep them at the forefront of your mind.

Stay strong