Update

[Twoblu]

Hi all. It has been 3 yrs now since my brother came out of ICU and then to a ward and into a home to clear space in Hospital during Covid.

Unfortunately his muscles wasted away within a month of being in ICU and the inability to move from the neck down . He is classed as quadrapleagic.

His legs have totally wasted away and one of them turns outward.

He can raise the fingers on one of his hands .

His other hand he can twitch his fingers slightly. The interesting thing is he can shrug his shoulders and he can move his head from side to side.

He cannot properly control his head when sitting in a wheelchair. Despite efforts the strength is not there.

Neither can he sit up and be able to control his body trunk.

He has desperately been trying to move his hands but without complete success.

.he operates his TV and a fan by bashing his head against a head switch.

He can speak a few words at a time.. although not very clear at times.

His health issues inclusive since ICU include.

. Visual issues

.hearing issues

Insulin diabetes fluctuating not steady

Critical illness myopathy

Critical illness neuropathy

He has had colitis

Hehas a fungal nail infection and is on meds which mean he has to becarefully monitored.

He has Ischaemic heart desiese and we have been told that any infection could cause his heart to pack up.

He has now developed pain in the kneecap area of the leg which is twisting the wrong way.

Unfortunately my Brother does not fit the norm of recovering from ICU.

Apparently community acquired pneumonia is what he initially had and also query heart attack with three small markers, tias.

I'm a little uncertain how he wasnt given treatment for pneumonia or heart attack when he was initially admitted to hospital.

He was put on an oxygen mask and into ICU overnight for observation.

And during the night at some point he was put into the induced coma .

Then multiorgan failure kidney dialysis

And the wasting away of his muscles and coming out of the coma and how he is now.

I don't understand. You see on trauma programmes patients being treated straight away for infections and heart attacks and often they recover.

So why was there time wastage and treatment not started.

I will never understand.

We got through covid. Visits blocked. Barely able to contact my brother.

However he remains in a home and despite only being able to move hus head from side to side and verbalise a few words he is amazing.

It's almost like he is locked in but he does have that slurred speech.

Despite all this. He does have moments of real belly laughing with us he is obviously a fighter.

So the joy we have when he does laugh is amazing. The sadness we have when he is agitated is heartbreaking.

The sadness we have to see him as he is is excruciating.

The moral of this update is Although the outcome of his ICU stay has been completely horrific.

For the odd smiles we get are just so amazing.

So don't give up. Try make your loved one smile laugh be as comfortable and aS happy as possible. Enjoy any smiles. Endure any outburst of expletives.

Be strong for them.

Good luck on your families journey.

[BigH63]

Hi Twoblu

That a horrific story journey, but nice to know you have some good moments, and yes all us ICU survivors should look and think how lucky we are even if we’ve been left with some more than frustrating issue.

Nearly forgot what I was going to write for a minute, ICU related brain fog lol. No I was going to say have you filed for he’s medical notes of admission, they might give a clue as to what happened and he didn’t get the imidate diagnosis and treatment? worth a try ?

Good luck I hope things improve

[Twoblu in reply to BigH63]

Yes. We've asked fir the notes. Thank you.

[DB1996]

I am very sorry to read your brothers story. Very best wishes to him and you.

[Twoblu in reply to DB1996]

Thank you

[Twoblu in reply to DB1996]

Thank you