I'm looking for some advice please about what questions to ask my partners doctors or nurses I've asked everything I can think of but is there a particularly question anyone think I should ask..
My partner who is 54 went in hospital in January for a bleed and since then he's had 5 more bleeds, three massive ones inside the middle of the brain ..
The rest of the bleeds they can't understand because it was unexpected and they were were on the right side and the back of the brain.. He's not had a bleed now for two weeks but I think that's cos he been put on blood thickens ( there is nothing wrong with his blood) after his last bleed.. He's due to come off that on Friday ..
They are hoping it's broken a cycle that his brain seems to be in by bleeding every few weeks.. They won't keep him on this drug cos they said its more harmful to him if he develops blood clots .
He had 5 operations and one twice of them he's had large amount of skull removed. As you can imagine this is overwhelming and upsetting as all the doctors keep saying they can't find a reason why it starts to bleed.. He's had tests after test and re tested again but still nothing is showing on all the different scans and blood test he has.
He had a stroke in the operating theater on the first operation and he can't move is left side
but the last few days his left toes is twitching I'm hoping that's a good sign and another good sign he had his speaking valve in and de cuffed for an hour and forty mins yesterday which was his first time since the last operation although he's not tried to speak yet.. Which he did before the last bleed..
I've asked but no one seems to know when he'll become more reactive with his surrounding and who is there... I think he knows Im there as he wants to hold my hand but he does seems to want to touch anyone's hand which I don't mind as it gives him comfort.
At the moment anyone can plod him and move him and he doesn't move to stop them or anything. Sometimes he just goes so unresponsive for a few hours or a whole day and then he might squeeze your hand, if you're lucky I might get him to stick his tongue out.
As you can see I don't know what else I can ask them . It would be great if someone knows of a drug that's very mild that would thicken a blood without causing harm rather than just stopping the one he's on at the moment.
Many thanks for reading this and sorry it's long winded x
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anne_marie
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Thank you for your post and welcome to the community.
Unfortunately at this stage after a severe brain injury it can be impossible to give information on the likely outcome. This is because every patient responds differently, so there is no way of making a firm prognosis as there may be with other medical conditions. This certainly does cause a lot of frustration, but in some cases it can be best to 'wait and see', while attempting to keep a patient medically stable and prevent further injury.
Has your partner been formally assessed to try to see if the responses are meaningful? There are assessments such as SMART and WHIM (see links below) that attempt to judge a person's awareness and functional ability. If these could be carried out it may, although not necessarily, give you a bit more idea of how much awareness your partner has, with meaningful movements and responses obviously being a more positive sign that those that occur as a reflex reaction. Perhaps this is something you could speak to the medical team about?
Some of the resources at the bottom of this page could help you to question the medical team more about what is happening.
I think medications are really something that only the treating doctors can advise on. It does sound like they are trying various techniques to get the bleeding under control, but they are right to highlight the dangers of forming blood clots. Balancing the risk and benefit is a really difficult process, but it would be sensible to speak to the doctors about the next steps after the blood thickening medication is withdrawn.
Can I suggest that you contact our helpline to talk this through in more detail? You can get in touch on our Freephone number, 0808 800 2244, or by email to helpline@headway.org.uk
Headway can be here to support you through this difficult time, and by talking it through we may be able to guide you on more questions you can ask the doctors.
SADLY I'M NOT REALLY SURE I CAN OFFER ANY ADVICE, MY BLEED WAS NOTHING COMPARED TO THIS. YOUR STORY REALLY TOUCHED ME.YOU ARE DOING A WONDERFUL JOB. IF YOU CAN TRY & TAKE A BIT OF TIME FOR YOURSELF, BE IT A FEW HOURS ONCE A WEEK OR A BIT OF TIME EVERYDAY WHERE YOU CAN DO SOMETHING FOR YOU OR JUST HAVE A QUIET SIT DOWN OR A SNOOZE.
I THINK ALL BI SURVIVORS WOULD WISH THEY HAD SUCH A CARING SUPPORTER.
Hello thanks for your kind words but i don't think I'm doing that great of a job ... All I want to do is hide! Sadly I don't even find time to do that.. People and work are understanding to a point cos he's been in icu and nhdu that many times but at the end of the day they can get off roller coaster and want you back into work plus bills need to be paid.
But I thought you might like an update.. He's been on the drug 3 weeks and 3 days . The reason he's been kept on it that long his doctor was away and the other doctor didn't want to make any changes to his meds till his doctor is back on Monday then they are having a meeting about it...
He's been put into rehab now and he's been there 2 days today, he's seem to have woken up and whispering words. They done a swallow test and he swallowed once but the rest of stuff went to his chest. I asked if that's normal and will he able to swallow once he builds up his throat muscles but she doesn't know so I guess that would mean he would have to keep the tracky in his throat till he learns to swallow... I also asked about the smart test and they don't do it for 3 or 4 weeks till they get to know him. But Tim does seem to know where he is which is good.
Hello and welcome to the forum anne-marie. Its good to read there seems to be some slight improvement, which will be good for your morale as well.
Your work situation is a difficult one for you - would they let you work part-time or a few hours less if you wanted to. Do you live and work near the rehab your husband is in now, which if you do, means you are closer to hand for visiting.
Whatever the answers from you are, as Zeblet said so many of us would have wished for such caring support. I hope your husband continues to make progress, the doctors will also answer your questions soon and results pf the smart test will be positive ones. xx
Anne-Marie You are doing a fantastic job putting one foot in front of another and not hiding despite the understandable urge for a safe refuge so congratulate yourself everyday for being so brave and loving. And receive the appreciation for your love and care that Zeblet and Shirley are expressing on behalf of us all and which your husband can't express at present. Keep us posted. Vanessa
He's doing well so far they've put the speech valve in for 2 hrs twice a day and sitting in his chair..
He's not really talking much maybe a word here and there and it's a whisper..
The doctors came round yesterday and did some test on him and asked if we were happy with him.. We said no cos he's not doing anything.. He did another test and said he thinks he has displacement ( not really sure what that means) and maybe seeing double.. He said he's gonna work on that and as I said before he doesn't respond all the time.. The doctor was firm with him and said touch your nose and he did and touch your eye he did and shake my hand
He's also scratched my nose and written his name also written "that will be a nice day" when his sister said she was taking their dad out for the day.
The doctor said he'll be disappointed if he doesn't see an improvement in 3 weeks cos he's gonna get Tim a lot of input ..
The sad thing for me is something acid.. To make his blood thicker well it's been. Over 3 weeks and it's no longer benefit for him to take it and the doctor Tim had nothing to lose but now he's recovering and he'll have alot to lose now if he gets a clot.. I knew he couldn't stay on it but it's still a worry.. It's been just over 3 weeks since his last bleed and the sod seem to love twos weeks but he's broken the cycle now :)) he better had or I'll be having words .
I'm about 15 mins from the hospital and an hr in rush hr also I tried to have less hours cos I look after one disabled child and there isn't bank staff there isn't anyone to take my hours short term.. Would have took the pressure off thou. I'll let you know how he's getting on when I know more... Many thanks again x
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