Quietly Hopeful

[ored13]

A few weeks ago I wrote a " New and Uncertain" post. There was so much support and understanding, everyone settled my mind and was incredibly supportive.

I was told a week and a half after my husband's collapse and resulting hypoxic injury that we should be saying goodbye as he would have no quility of life and live in a vegetative state possibly intubated as they thought he wouldn't be able to maintain his airway after his aspiration pneumonia which cleared and then returned once moved to a general ward. We had to fight this advice HARD to be heard and get an MP involved to stay the hospital's hand. Absolutely the worst few days of my life.

Guess this is now a bit of a follow up post. My husband is now in a specialist BI unit in Dundee where he has been for just over a week after spending some time in the neurosurgery ward while waiting for a bed to come available. He's coming on leaps and bounds in there, what a difference there is from him being in a general hospital to where he is now. The staff are amazing. His speech is improving daily, he has this week started doing daily walking and is up to 16m with some support on either side, and yesterday was up to cycling 2 miles on a specialist bike. He's no longer being moved in a hoist and is using a transfer board. Also is on a regular diet having his drinks thickened only slightly until he can take measured slow sips rather than gulp. Best of all he is still him and wants to be involved in decisions for the kids where he can...should our son spend his pocket money on some nonsense gaming content online etc.

So not quite the result they had originally projected and tried to force us into agreeing with.

I have had to post this just to remind myself and anyone who finds themselves in this awful, frightening (and down right intimidating) position as spouse/family member... that the brain is capable of amazing things, but to be patient and look at the small wins. I'm learning every day. And thank you to everyone else's posts. I'll keep reading and learning.

[pinkvision]

It's amazing news. Such a pitty people have to fight to get the correct support. Very happy for you.

[ored13 in reply to pinkvision]

Thank you 🙂And yes it is quite shocking some of the stories I've heard.

[Shreds]

Hi

That is such good news and amazing progress. You have done the right thing, made the right moves (difficult as they might have been), and he is so lucky to have you as his support.

That will be invaluable for him, even though he doesnt know it and its great he is already thinking about his role in family life.

Keep us updated here.

Best. ❤️

[ored13 in reply to Shreds]

Thank you Shreds. ❤️ I was quite old pleased when he started showing interest in things. We had a chat about what we were going to do as far as housing etc today which I just found remarkable!

[cat3]

So many improvements Ored ; SO pleased for you both ! xx

[ored13 in reply to cat3]

Thank you thank you. And I am loving this group so much advice and support esspecially during the times you just need to read something to calm the nerves. 🙂

[cat3 in reply to ored13]

That's good to hear Ored ; this forum has truly been a lifeline for me and, after 9 years, I'm still looking in daily ! x

[New_beginning]

I was thinking of you and how your husband was progressing. Crikey, Yes sure is daunting with reflecting but sure does support that inner strength you both have. So pleased of the outcome and wish you both many more steps forward.

[ored13 in reply to New_beginning]

Ah thanks so much for the thoughts! ❤️ How are you and your family doing?

[New_beginning in reply to ored13]

Were all doing well considering; though the sensations husband having down whole left side been regular and happening multiple times a day especially past 2 weeks, but at same time improving on describing symptoms, managing to talk through it mid way, face not drooping like before and has more awareness and on my part seeing as positive so I can help explain now, but sadly the home visits been postponed, no one called me back from Tuesday, and to add behaviour is difficult (only directed at me) were 10th month now, so coping mechanism building slightly on that front and despite his unpredictable ways, I am just thankful and still feel luck on progression being made, and not diving into deep on reflecting if that makes sense. X

[ored13 in reply to New_beginning]

That's great that there is some progress and of course rubbish about the home visits. Surely this is something which should continue with PPE. That's very confusing that the support works disappear like that. But wonderful to hear there is that progress ❤️

[New_beginning in reply to ored13]

Seems services are sacrificed when national lockdown occurs,. Nevertheless, promising with progress despite the rollercoaster journey x

[crashclown]

Fantastic news.Thank u for the update.I'm happy for u n ur entire family.😊👍❤

[ored13 in reply to crashclown]

Thanks so much. I'm again quietly hopeful that things will keep improving 😁

[Lulu_Lollipop]

That is great news xx

[ored13 in reply to Lulu_Lollipop]

Thank you Lulu... Baby steps...I have to remind myself.