Day 57, No More Ventilator, to good to be true?

[Westbeginners1]

Hi Everyone,

Me Again! I feel this is one of the only places i can get everything off my chest that is happening with my mum with people who understand and have been through similar.

I have a bit of an update on my mum for those who have previously followed her journey. Apologies if i have said any of this before, I loose track of where we are at!

Mum has not had any anti-biotics for coming up a week now, her infection indicators remain low so i am hopeful for now there is no more infection.

She had been using the Swedish Nose adaptor on the tracky for coming up a week now on and off and it seems to be helping clear some of the secretions. She has also been having time off the ventilator, breathing on her own but still with Swedish Nose. It starts at 1 hour 3 x a day then moved up to 8 hours straight for a day and then 12 hours straight for a day and i am very pleased to say that she has had no ventilator help now since Friday night, they took it off Saturday morning and so far has not had to go back on it!

It has made me a bit worried as the last time the took the tube out of her mouth she lasted nearly 48 hours before they had to put it back in. That is when they started to say she was to weak and wouldn't make it. I called this morning to check on her and they said she had a moment in the night when her heart rate increased and they considered putting her back on it, but with some medication it returned to normal. I am worried now that at any point she tires they will tell me she is to weak and there is nothing more to do.

She has been also sitting in a chair for a few hours a day and seems to really enjoy that and looks like her old self sitting in it.

Last night they put a speaking valve on so i could hear her .. went in and she was fast alseep the full visit! talk about anti climax! I am hopeful she will be awake and able to chat today.

She still has a lot of secretions that she is able to cough up now a little herself. Is anyone able to share their experience with secretions? as in how long did it last? is the only way to get rid to cough it up / have it suctioned? she seems to have had secretions for weeks now.

If you have read it this far then thank you! a lot to get of my chest!

[Sepsur]

a strong cough is helpful and suctioning - which was vile - it sounds like your Mum is making steady certain progress. It just shows we are all different- sitting up was agony for me, at first I was too weak & out of it to be able to vocalise that. I’d lost so much weight that I had no cushion on my backside for instance - 2 x memory cushions were ideal.

[Westbeginners1 in reply to Sepsur]

She can cough better but they are not sure if it is strong enough for her to be able to cough it up if they take the tracky out. Consultants are having chats about it today. I know it is a bit step and a good one getting it out but the thought terrifies me, in case she struggles. funnily enough she was telling me yesterday her backside was sore in the chair!

[Sepsur in reply to Westbeginners1]

Get her another physio cushion 💙

[FamilyHistorian]

Thats good news. I was only allowed to have the voice box for short periods so it was very frustrating when they took it away. Don't worry if her voice sounds different. Mine was like an american cowboy at first. As Sepsur says those chairs are so uncomfortable because of the padding weve lost but it is certainly good to be able to sit up.

[Westbeginners1 in reply to FamilyHistorian]

She only has the voice box a couple hours a day too, it is helpful but there are times it is still a struggle to hear her because of the secretions. She seems to enjoy sitting up and people watching!

[Pickles789]

Hi Westbeginners1 it sounds like a rollercoaster and not an easy time for you all. Hopefully the progress continues and wishing all the best to your mum and you. My mother is now 6 weeks on the ventilator (the first 10 days were intubated, the rest with a trachy). It is an incredibly slow process so I hear you!

[Westbeginners1 in reply to Pickles789]

Hi, thanks for your message. how is your mum getting on? my mum couldn't get a tracky until week 6/7 in ICU because she had a neck infection so was to risky to put it in. She has come a long way since she got it in. Slow and steady but would rather that than backwards! They are chatting about taking the tracky out today .. terrifies me!

[Pickles789 in reply to Westbeginners1]

Taking the trachy out must indeed be scary but also a wonderful sign of progress and recovery. My mum is 'okay' but dealing with a terribly slow, uncomfortable and anxious recovery. She only weans a couple times a day at this stage and only for around 45 mins so you can see how slow this is and it's week 5 of weaning! I am also on the other side of the world so the distance is hard. I was there with her for the first three weeks and will be back again soon Let us know how it goes

[Mich898]

My dad when he had been in an induced coma and wouldn't wake up, had a tracheostomy. But then at night the doctors thought they'd meddle with it and he passed away . Sorry about your mum btw. I know how tough this is I still cannot get over it. Just be very alert with what they're doing is my best advice to you.

Michelle