Dad

[tulip24]

Hi all,

I'm so glad to have found this website.

My Dad had a massive SAH two weeks ago on the 28th March. Prior to this he was already in a wheelchair as he has a muscle wasting disease.

All his life he has been active, having been a member of the Royal Air force for nearly 20 years & was a member of the mountain rescue team for 25 years. He was already finding it hard to cope with being immobile.

When it happened he was trying to transfer out of his wheelchair when he had a massive headache and asked my mum to call the ambulance. When I got to the hospital he was being sick, but was still awake. He was given some painkillers & then started dozing off. Mum & I weren't for concerned at the time as Dad sometimes has periods where he is overcome with tiredness due to his condition. So we just let him sleep. I had no idea- I'm a nurse, so feel I've failed him in some way.

The Dr eventually saw him & sent him for a CT scan straightaway. Next thing we knew he was taken into resus & was then transferred by blue light to Sheffield.

He has been on ICU ever since.

The first night he was given a 15-20% chance of survival. They put a drain in.

Then his heart stopped. A few days later his kidneys stopped working.

They have been having problems keeping his blood pressure stable.

On Monday they coiled the aneyursm as he has been too unwell up to that point.

Yesterday we went to see him & were so happy that he seemed to be bright, responding to us even though he's still on the ventilator.

Then today we went, to find they had replaced the drain because it had blocked causing fluid to build up. He seemed so flat & looked so unhappy. Hardly moving. They are now talking about a tracheostomy.

We spoke to the Dr who said he is still critical.That it's a waiting game. It's been two weeks he's been on critical care. Yesterday we felt so optimistic. Now, I am so scared of the outcome. My Dad has always said "never let me get like that".

It is compounded by the fact that when he loses muscle, he cannot regain it. He already had swallowing problems as his condition progresses, weakness in his arms, unable to walk etc. The longer he is immobile the more muscle he loses.

I realise that nothing could have predicted or prevented the bleed. I just hate to think what is going on for him at the moment. He must be so frustrated, scared, angry. I feel so hopeless & helpless.

I also don't know how my mum is coping, although I think she is really struggling. She nursed both her parents through long illnesses. Then my dad developed this wasting disease. Along with other horrible times which I won't go into, I feel so angry. Neither of them deserve this. They have both worked so hard all their lives. Anyone who says you make your own luck in this life has never met my parents. They are the two kindest, easy going, hard working people, but life seems to kick them back.

Sorry for ranting. I'm just so scared of what is happening. I want what's best for my dad & mum, whatever that may be.

[Gill C]

Tulip welcome to BTG

One thing you can never do is blame yourself for not recognising the signs (which are usually few until its critical). A lot of us on here have been misdiagnosed before eventually being treated. I was told so many things in my 6 weeks before my op but as my anni didn't rupture I didn't have the classic signs of a bleed (just the head pain, double vision) but was told it as cluster headaches, migraine, a muscle spasm etc.

Its still very early days for your dad & his brain will be struggling to repair itself whilst carrying out normal functions. As a nurse I'm sure you know the brain is a wonderful organ which can rewire itself in amazing ways. It is just a case on focussing on one area & trying for small improvements which will come together as a whole step forward. Its going to be slow & he'll need lots of support but I'm sure with you there & help from the hospital you will get there.

Don't forget to pop in & tell us how hes doing, take care & be strong xxx