Brain damage

[Cmc87]

Mum in Icu for the past 3 weeks. Totally unexpected shock, she had chest pains and got taken in ambulance with suspected heart attack. Turned out to be a tear in her aorta. Had emergency surgery. The damage went from the top of her legs to her neck/head. When they operated they noticed damage to the vessels in her head and that one was blocked and the other partially blocked, they repaired what they could. At some point she has had a stroke as it showed up on one of the scans. She was sedated (firstly with propofol then midazolam) and everytime they tried to wake her she was having seizures. She's now off sedation but on 4 different anti epilepsy medications. Kepra, unsure of the other 2, and recently added clobazam. At one point she was opening her eyes a bit but now nothing since adding this last one. She's also had a tracheostomy. Stable, and everything heart wise healing as it should. Only issue is these seizures/not waking up and issues with the brain. Had MRI on Friday and shows multiple infactions/diffused. But we won't know the results and the neurologists interpretation until they've all had a meeting on Tuesday. Last Wednesday we were basically told to consider having to turn machines off at some point if the damage was irreversible and there has been talk of palliative care which came as a shock. Up until then we'd just been told to be patient and wait for her to wake up. Best case scenario is a long hard journey ahead. Unsure of the cause of the brain damage or the extent, just that it's "bad". I miss my mum. Any advice/previous experience? Questions I need to be asking etc?

[ABIfamily]

Hi. I am so sorry to hear about this. Nothing prepares you for the shock of an event like this. Your mum sounds incredibly strong, and I hope you have some clarity after the MDT on Tuesday. No advice re your mum, sorry, but look after yourself and will be thinking of you and your family. Xx

[cat3]

So sorry hearing about your mum Cmc ; I can only imagine your shock and sadness. As far as questions you can ask I would suggest you contact the Headway helpline on 0808 800 2244 (freephone/office hours) where experienced staff may have the most relevant suggestions.

Please let us know how the meeting goes tomorrow.

Wishing you and your dear mum the best possible outcome...

Regards, Cat x

[Cmc87 in reply to cat3]

Thank you x I'm planning on giving them a call but wanted to know more about what we're dealing with so I could ask the right questions and get the best advice.

[cat3 in reply to Cmc87]

I hope your meeting on Wednesday gives more hope. Don't be afraid to admit you're out of your depth in understanding your mum's issues or to ask anything which is bothering you such as the exact nature of her brain injury.

Make written notes of all the questions you have for the neurologist to be sure nothing escapes you. It can often be daunting speaking with the doctors and easy to lose the thread of what you needed to ask.

Doctors can't offer a prognosis as their only observations are in the here & now. This is standard and not avoidance ; they really have no way of knowing the outcome. It's a massively anxious time for loved ones..

Rooting for you & your mum m'love. Cat x

[Pairofboots]

Hi, I'm sorry to hear your situation. I don't have any advice. This has been one shock on top of another in rapid succession. You haven't had a chance to take breath. It is horrible not knowing, but at the moment, all you can do is wait and trust in the medic's, eat, although you probably don't want to, try to rest even if you mind is screaming, and take on plenty of fluids if this is all you do. Take care, and best wishes. 🍀

[Cmc87 in reply to Pairofboots]

Thank you x Have had plenty of cups of tea!

[Cmc87]

Thank you so much for the replies. I had a call from the ward sister tonight. They had a mini Mdt today, no longer having one tomorrow. The bottom line was they are tweaking her medication again (changing dose of the one beginning with L and looking to add phenobarbital on Wednesday) and that the neurologist doesn't want to commit to a prognosis yet. He's agreed to have a meeting with us on Wednesday afternoon to answer any questions we may have. But because we don't really know or understand the issue I'm not quite sure what to ask. I do have a lot of questions and will be good to clarify and summarise but really want to make the most out of the opportunity to meet with him. I've taken the neurologist not giving a prognosis yet as a positive, because he hasn't written her off just yet! But I have had a optimistic day today and have been reading up on success stories and miracles so may feel differently tomorrow. I do keep being told to prepare for the worst so feel like they are trying to reign me in a bit. I think it's a catch 22 of her not waking up because she's on so much antiepileptic medication zonking her out but that they can't stop that because of the seizures and they don't want to cause further brain damage. Just need to break that cycle somehow. Xx

[Cmc87]

But as another positive she's been off the vent all day and done well so they will be reducing the pressure tomorrow with a view to start weaning her off. Xx