DH Stroke ICU

[KingJanie]

Please help me.

My Dh is in icu following a stroke during Neurosurgery.
He initially seemed not too bad but then developed sepsis pneumonia and was put on a ventilator.

He's now off sedation and breathing himself but they don't want to remove the tube as they suspect swallowing difficulties.
They are talking about putting a Tracheotomy in.

I'm reading conflicting opinions on this. Some say it raises the risk of more swallowing issues and pneumonia others say it alllows more time for swallowing therapy and rehabilitation so better outcomes.
Does anyone have experience of this?

No direct experience, but replying to help get you attention and to reassure you that someone is here and listening!

My uncle had a tracheotomy put in while in ICU after contracting chicken pox. It was meant to be temporary but ended up being made permanent. He lived for another nearly 40 years and died of something completely unrelated, so it was definitely the right thing for him. It wasn’t a big deal to us, but perhaps, as I was just a child at the time, I didn’t know a lot that was going on. We were just told he was very sick, then that he wasn’t likely to make it, then warned that he would have the tracheotomy next time we saw him.

He used to wear a bow tie a lot to make it less obvious.

OP I’m so sorry you are going through this. My DH had a stroke several years ago. I know how awful this is. I don’t know the answers to your questions but I wanted to tell you that my DH made a full recovery even though it felt completely improbable at the time. I hope yours will too. I’m thinking of you and sending best wishes.

Thank you so much for replying

I am awake crying and researching and just not knowing what to do.

I can't believe this is happening

I have absolutely no advice at all, but I am sending love and a hand hold.

No advice unfortunately but just wanted to send a hand hold

My dad had throat cancer in the 1970 the hospital removed the cancer and lived with a throat hole untill 2010 he passed at 103 never had a problem please don't give up and don't worry try to get some sleep .

I had a tracheostomy in ITU after contracting pneumonia. It was much better than the tube and allowed me to be fully awake but still have help breathing. I had it for nearly two weeks.
please don’t be frightened of it. It is a useful tool and they would only be suggesting it if it was a good thing to do. Good luck and all the best to you and your DH

Thank you so much for responding.

I am in a terrible state. I haven't slept or eaten much for a week. Everyone is saying look after yourself but I can't while he is suffering. I'm the only one who can help him and I want this to be the right decision for his long term prospects.
I feel they are rushing to the trach without giving him an opportunity to manage on his own.
He is breathing himself but has swallowing difficulties so at risk of aspiration again.

@KingJanie just as an aside it is standard practice to have a tracheostomy done after 5 to 7 days of having a breathing tube in.

It does not have to be permanent, and can heal quite quickly once the trachy tube is removed.

I know this was the case when I worked as an ICU nurse a few years ago.

for you and your DH

💐 hand hold from someone who has no knowledge about the decisions you need to make but wants to just be here for you both.

If he still needs support with breathing and the question is tube v trachy I'd pick trachy every time. If you're researching, also look at adverse effects of long term intubation as it carries significant risks.

There are no easy choices but you are doing everything you can and seem very strong. There's a legal right to a second opinion now, why not ask another doctors view as well.

Aspiration is a huge risk with significant consequences.

Thinking of you whatever you decide

@KingJanie I was an ITU nurse. Endotracheal tubes (ET tubes) are uncomfortable and make talking impossible. When people lay in bed for a long time, they lose muscle mass at an alarming rate. Tracheostomies are really helpful because they allow gradual weaning from breathing support, which means that if someone gets tired after a physio session, they can have some support again, and they allow movement. A special valve can be added to the end of the trachy to allow speech.

It's a quick procedure and when it's time to reverse it, the hole will just heal up, leaving a small scar in the hollow of your DH's neck.

Thank you so much for responding.
I want him to be more comfortable and start some physio.

It's just he is breathing on his own so part of me feels he should be given the chance to see if he can avoid the tracheotomy.

They are saying the issue is swallowing not breathing. But again I wonder if he'd be better getting swallow therapy without the tracheotomy? I've read the tracheotomy can further impact swallow negatively?

Thank you so much all for responding. I have never felt so alone and lost.

I am heading to the hospital now and going to ask to discuss with the doctor this morning. Please advise on any questions I should ask.

DD had a trachy at 9 weeks. It was in for three years. It never affected her swallowing.

She learned to talk by bobbing her chin down over the trachy to block the opening.

Having a trachy means that if your DH aspirated he can be suctioned before it reaches his lungs.

Wishing your husband a speedy recovery 💐

I would ask:

• Why do they think that a tracheostomy would be helpful (they should be able to give you a clearer understanding of their reasons)

• What would happen if your DH doesn't have the tracheostomy? (I think they will say that he will repeatedly aspirate - breathe liquid into his lungs - causing infection and increasing his likelihood of death)

• How long do they think the tracheostomy will be in place? (Are they thinking short-medium term to allow for Speech and Language Therapy and Physio, or long term?)

-If long term, who will care for the tracheostomy? Will you get support from community nursing teams at home (the answer will be yes).

Honestly, I can guarantee that they won't be suggesting it unless they think it's the best way for your DH to recover.

I say this with kindness as you are exhausted and stressed, you don’t need to research benefits and risks, the very skilled intensive care team know what they are doing.
trust them and let them guide you through the process.
the work done in intensive care is extraordinary to us but ordinary to them.
focus on staying as healthy in mind and body yourself, if you can’t rest at all chat to you Gp asap.
lean on friends and family to help you through, try and spend some time out of the hospital each day.

a few very general thoughts from an anaesth/icu doc...what they're proposing is completely normal. When a patient tolerates an oral tube without having any sedation on that usually raises questions about the swallow.

If they're are concerns about someone's swallow their airway needs to be protected from secretions and a trachy does that. If they just take the tube out and 'do swallow therapy' the risk is of aspirating and get another pneumonia before the swallow's back to being decent.

A trachy is much more comfortable than an oral tube and can allow more normal muscle movements, can allow better oral hygiene, and can allow speech if a patient's able. Quite often you see fairly quick improvements before a trial with the cuff down and then a trial without the trachy or with just a minitrach.

Also, if on his first trial without a trachy things don't go so well it's much less invasive to reinsert it than to reintubate someone orally.

Thank you i I know you are right.
But I do really feel I need to fully understand.
My mind is racing.

Thank you.
This sounds like what they've been trying to tell me I think.

Can he work on developing his swallow with the tracheotomy in?

He's had sepsis pneumonia due to aspiration and we really need to avoid the again.
He's very weak because of the sepsis but he's fully cognisant following directions and communicating with hand squeezing.

They took the tube out but the secretions built up in 24hrs so he's been put back on the ventilator and they are going to do a tracheotomy tomorrow.

Will they work with him to regain swallow? How successful might that be?

I can't bear the thought of him never being able to eat or drink again.

ICU nurse here. Don’t look too far into the future. Let’s just get him sorted with a trachy for now which will help him get off the ventilator. The swallow will be what it will be but what is front and centre now is keeping him safe from aspiration etc.
Every day is a new day in ICU and honestly they only do what is necessary - and for many many patients it is a trachy. Scary thought I know but honestly far more damage is done by long term endotracheal intubation I promise.

Thank you for responding. I'd just like to know whether regaining his swallow is possible?

Will he be able to talk?

I accept it's needed to keep him safe but I can't help but think about his quality of life.

I've had TWO tracheostomies OP.
(I've been in a coma on 2 separate occasions, 6 weeks and 8 weeks)
The first time ( 6 weeks, I could swallow fine as soon as the trache was out but that was only because I could maintain my cough throughout)
The second time - it took a while for my swallow to come back - I was on a thickened fluids and blended diet ( EVEN after trache came out)
YOU CANNOT TALK WITH A TRACHE unless they open your valve.
Tbh I hated the tracheostomies they are so uncomfortable - they put a tube down it to suction the mucus out and it makes you cough but it's awful when you lose your cough as well.
I hope he is ok.

I still have swallowing issues occasionally due 2 silent reflux and excess scar tissue but I can talk fine

I had sepsis pneumonia in 2020 and had a trach while in the coma. It was still in when I came out of the coma.
I was able to speak with a speaking valve.
I learnt to swallow again within a month (I had been in a coma for a month).
When the trach was removed, they covered the hole with a dressing and it healed up really quickly.
HTH

I get that.
whether he will be able to swallow or not is down to what his neurological status allows, in this case. The trachy is a necessary intervention and will have little bearing on his future swallow compared with the greater risk of not having one.
It is difficult to hear, I know, but his quality of life is a future problem. What’s an immediate problem is keeping him safe from the high risks associated with aspiration.
I hope you don’t mind my being blunt here. I really do understand how awful this time is for you and I don’t want you to get derailed by what if s