Speaking tracheostomy

[Anuur44]

For the first time in 7 weeks I heard my mums voice. They changed her tracheostomy to a speaking trach so at moment she is only doing 15min weaning process 4x a day. So within this 15 min she can talk. She is still very unwell and relies a lot on the support from the ventilator. She caught an infection called VRE which doesn’t seem to be coming down. They’re also worried that she has been on noradrenaline for over 12 days to help support with her low blood pressure. Hearing her voice gave us so much hope. Has anyone’s loved ones had a speaking tracheostomy? Is this a positive move towards recovery? To me she seems to be making a lot of progress but doctors update is always same as yesterday and static. How is she the same if she can now breath with minimal support 15mins and can talk? Few weeks ago she was in a vegetative state and unconscious so I really don’t understand why they keep saying she is not making any improvement

[FamilyHistorian]

That is really good news but a double edged sword

It really boosted my morale when I could speak but then your voice is taken away from you. This made me 😤

Gradually I was allowed more time

[Anuur44 in reply to FamilyHistorian]

FamilyHistorian i can’t imagine the feeling of someone else controlling the freedom to speak. From being able to express yourself to suddenly muted. I bet this makes the icu delirium even worse

[Sepsur]

Brilliant news!!! Onward and upward. Steady progress is best thing. VRE is a persistent little bugger - I think I had it for a few months after discharge from hospital

[Anuur44 in reply to Sepsur]

Sepsur how did your vre go away in the end? Did you had to take antibiotics for it? Also was it making you feel poorly or it was manageable?

[Sepsur in reply to Anuur44]

To be honest - the hospital were concerned whilst I had it in ICU. When I dropped down to the wards it’s only impact was to keep me in a side room because it’s easily spread around to others, I had my own shower & bathroom etc etc. In today’s world, I’m guessing VRE is the least of their worries. It’s a bacterial infection that many people get in ICU from prolonged use of antibiotic. The bacteria in the gut become resistant to the antibiotic - hence the ‘R’ in VRE.

Healthy people aren’t really affected, it only goes haywire and becomes a problem with immunosuppressed people, a spell in ICU does that.

A healthy diet with lots of vitamin, minerals & fibre re-established good gut hygiene and the VRE becomes controllable again. It took along time to get right - maybe a year. I might have been treated with an antibiotic that wasn’t vancomycin as well, to get it better under control to start. Whilst in hospital I’d get fever off the infection which wasn’t that big a deal because I felt shit anyway. 😊. It is serious but only when critically ill - later, it is just inconvenient

[LeopardGecko]

Definitely a good thing 😀 My husband really looked forward to having his speech valve on despite it being really tiring to use. As FamilyHistorian said, it is really frustrating to lose it again after a short period of time but your mum will gradually be able to build up the time she has on it.

I think I felt the same as you at this point. They could never really tell me that anything had changed but to me, the fact that he was able to talk to me was definitely a step in the right direction. Maybe to the staff, the changes are so tiny that they don't feel it worth mentioning but as a relative, you cling on to any scrap of information.

I hope your mum continues to improve and enjoy hearing her voice 🙂

[Anuur44 in reply to LeopardGecko]

How is your husband doing now LeopardGecko ? Literally cling on to any positive update

[LeopardGecko in reply to Anuur44]

He got home last Monday and is doing quite well. Starting to walk without crutches and getting used to life back at home 🙂

[Sensationalsoldier]

Hi Anuur how is you mother doing?

[Anuur44 in reply to Sensationalsoldier]

Hi Sensationalsoldier shes still in icu but she’s making slow improvements. She got the tracheostomy on so they are trying to let her breath on her own 20min every few hours. Sadly her infection markers are going up but in much better position then she was last few weeks. Already 2 months in icu on ventilator so want her home ASAP. How is your dad? Hope he’s doing well

[Sensationalsoldier in reply to Anuur44]

That’s good to hear she’s come a long way over the past few weeks.. my dad is in a very similar situation, had the Trachy 12 days ago, 4 weeks in ICU and has been weaned off sedation a number of times and put on the cpap with us being able to FaceTime and communicate with him, although he understands what we were saying and can move his arms and nod etc , he became agitated with the delirium so they had increased his sedation and started the process over again. Oxygen still around 30-35% peep between 5-8 so doctors want to wait until this is reduced until they fit a speech valve.

It’s so frustrating as we all just want to communicate with him but I know it’ll be limited and still with the sedatives floating around his system. He picked up another infection also, but markers are coming down and that’s on its way out now, so we start again! Really hoping he will get into the next stage of recovery so we can get him home soon but it just seems like it’s it’s last hurdle to get off sedation, out of delirium and off the ventilator which is going to take time now.

Keep the positive energy and keep focused on them getting better! 🙌🏼

[Psp007 in reply to Sensationalsoldier]

hello hope you don't mind me jumping on! Dad os on day 14 tracheostomy and so was keen to know how your dad is doing? Dad is also waking but i think severely with delerium as he looks so confused etc.

[Sensationalsoldier in reply to Psp007]

Hi Sorry for the late reply!Dad got discharged from hospital 2 weeks ago! The recovery from icu and step down ward was very quick.. although there is a long road to recovery ahead of him he has done amazingly well and we are just pleased he is still here.. I hope your father recovers quickly after coming out of sedation.. be prepared for a few weeks of delirium but Keep Positive!

[Anuur44 in reply to Sensationalsoldier]

This is amazing news Sensationalsoldier how is he doing now? Can he walk? Did he go home with oxygen?

[Psp007 in reply to Sensationalsoldier]

That's such lovely news! Wishing his a continues speedy recovery!

[Dezza]

Hey, I was on ICU for 56 days, 3wks in an induced coma.

They eventually were able.to wake me up and after time, I had a speaking tracheotomy. They called it 'Cuff up, or Cuff Down' and I was allowed short bursts of time on it and stayed that way for a while. Weaned off the tracheotomy very slowly with longer times able to speak. I had to have SALT, Physio and everyone involved regarding swallowing etc but it just takes time.

I really do hope all will be ok xxx