In need of support

[myhubbypaul]

Here is my story......

My husband when to the doctors last September as he was feeling unwell.

The doctors told him he had a chest infection and sent him home with antibiotics.

Two days later he was still unwell and feeling worse.

I sent him back to the doctors as he had developed a rash on his face, which the doctors said was from him coughing.🤔

The doctors told him to go to the hospital, this was on a Thursday. They put him on IV antibiotics and oxygen, but the rash started to spread down his body, and doctors said it was a reaction to the antibiotics.🤔

I spoke with him on the Friday and he seemed in good spirits, early hours of Saturday morning, I received random texts from my husband saying, come and get me, don’t phone me, just come now.

I rang the ward and they said he had become agitated and had taken his oxygen off and walked off the ward.

10 minutes later they phoned and said, not to worry we have found him and he is back in bed and back on oxygen.

Couple of minutes later, the hospital phoned me to say he had a seizure and had gone into respiratory arrest, and had put him in an induced coma.

He remained in a coma for over a month, they tried to wake him on numerous occasions, but he wasn’t responding, we were told that my husband was classed as being in a vegative state.

They did some brain function tests, and could see he was responding to pain, cut a very long story short, breathing tube taken out, trachy put in, tracy taken out peg feed in.

4 months in hospital, and is now currently at Frenchay brain injury rehabilitation centre. He can speak but doesn’t sound like my husband, his personality has changed and is loud and demanding. He can move his arms and legs now, but needs help with everything as he is unable to do anything for himself.

5 months in and now he is having problems with his eyesight.

It’s so frustrating, as no one can say how all this will end.

Will he return to normal?

Will he able to walk?

Will he be able to feed himself?

Will he ever be able to go home?

Would really love to hear from anyone that has or is going through anything similar in the uk.

Just feel broken and miss my husband terribly.

After further tests, they discovered he had caught measles, as he was not vaccinated as a child 😭😭

Xxxxxxxxx

[cat3]

Oh Tracy, there's little I can say to give you comfort in what must be a time of utter heartache.

What I have learned this past 6 years is that anything's possible after brain injury, and often after serious trauma/illness where the patient's prognosis is bleak, we see accounts of remarkable progress.

So your husband's initial problem was Measles (for which antibiotics are ineffective) and his condition, which can be serious in adults, went undiagnosed. And though there's no specific treatment for measles except for hydration and rest, in adults it needs monitoring for complications.

I'm not clear on the nature of your man's injury Tracy ; is it damage caused by Hypoxia ?

[Solus_Spes]

My dear at first big hugs what a confusing time and scary for you. If I am reading this correctly and cats post if it is hypoxic injury he has then anything is possible and it will take time, he may have differences but with the right support it will become manageable.

I can 100% relate to missing your husband, my boyfriend is in hospital and I miss him, we were lucky and got him back as it were but I still miss him, miss him at home and the things we used to do and haven't done these past 3 months, I also found I have been through a grieving process for life that could have been. Stay strong, let him know you are there for him.

My story Nov 17 bf found collapsed turned out was hypoxic brain injury. 4 weeks in ICU and in neuro rehab since 27th Dec. He is responding well and hopefully home soon but He has had to relearn to walk and feed and shower, his planning bit in his brain needs prompting now and again.

Stay strong and know that we are all here should you need a person to talk or ask questions or rant if he drives you mad (which he will and there is no shame in that) don't feel alone xxx

P.s. I hope that all made sense I struggle with words something terrible,

[Elenor3]

Hi

I can’t even begin to imagine what you’re going through - I’m so sorry. I can’t really offer much by way of advice but I know of someone (who was hospitalised in similar circumstances with a misdiagnosed illness) who went through a similar experience. His treatment was similar in many ways. He was hospitalised for almost a year before trying days at home, then weekends at home, before a whole week and then was discharged. Once at home (as he lived alone, he had a daytime carer and a night time carer at first, then within a few months the night carer was dropped and it was just day time assistance. This was followed by less and less day carer support until now when care is just twice weekly visits by community neuro team.so it’s been a long time but he’s getting there and has lots of independence. There has been a long period of day patient treatment e.g. neuropsychology, counselling, retraining for life skills etc, but in the end it’s turned out a lot better than his family ever believed possible. I do wish you all the very best with the recovery process . From reading posts on this forum for almost two years now, the biggest thing that stands out is the length of time brain injury requires compared to other illnessses and accidents. People seem to talk about a two year length of time for the major part of recovery, and then continued recovery for life. Try to make sure that your partner accesses all the rehabilitation on offer. Whatever’s on offer- take it. Check with Headway help line to see if there’s a group in your area. Headway can help with advice on lots of things. Apply now for sickness benefits / council tax support etc. if that applies to your situation, rather than leaving it till later. Do let us know how it’s all progressing. Sending you a hug

[54Apple54]

My prayers are with you and your family for a swift recovery for your lovely husband x

[steve55]

hi i have a bi, the only thing i can respond to is the behaviour change.

before medication, ihad aggressive behaviour mood swings, hated people and crowds, was noise intollerant and my behaviour was inappropriate inside and outside the house.

you maybe lucky, but fore warned is fore armed.

wishing you well and welcome to the club

steve x