Issues with traceostomy and agitation

[Beanyynwa]

My sister has been in ICU since 26th Feb 2021 after contracting COVID. She has been on a ventilator and initially needed high levels of oxygen and pressure. Doctors were not optimistic about her chances of surviving.

My sister has not had any issues with her other organs, or dialysis or sepsis etc. She had bacterial infections but responded well to antibiotics. No new infection as far as I am aware.

My sister had a traceostomy last Wednesday. They had hoped to do it previously but for numerous reasons could not. They also explained that because my sister did not have a big neck and had loads of tissue in front of her trachea the procedure was complex. Procedure carried out in theatre by ENT surgeon. Risks explained and we were very anxious but it went well- phew.

On the following day last Thursday doctor reported that there had been a setback in that her oxygen requirement increased to 80 %. He explained that this sometimes happened.

My sister improved gradually and oxygen requirement went down gradually to 30% but she struggled with this so back up to 40%. She was reported to be more engaging and responsive.

We are allowed to visit her once a day for an hour. She has been appropriately nodding and shaking her, smiling, trying to blow kisses etc. She is trying to speak and understandably frustrated that she cannot and that we cannot understand her. I have acknowledged this and reassured her that she will speak in time. My sister is trying to move her right hand and legs. My sister has a lot of secretions from her lungs which are regularly removed.

Doctors were pleased with her progress as her oxygen requirement came down to 40% and they planned to slowly reduce the pressure from the ventilator. They have explained that she remains critically ill and that there is a long way to go.

Yesterday my sister asked another sister who was visiting to take her home and got upset when she explained that she needed to stay in hospital as she was not well enough to go home yet but reassured her that she would come home once better. My sister is worried that she will not speak or walk again and has been reassured.

Today when another sister visited, my sister had no memory of previous visits including the one the day before. She presented as more agitated and was asking to be taken home. She is expressing distress, anger and upset.

The nurse looking after her told my sister that there is an issue with the traceostomy as there is a great deal of secretions coming from the wound. The monitor indicated at one point that there was a blockage to the airway so nurse did the suction procedure to clear it. Nurse reported that my sister would need to go back to theatre on Monday for traceostomy to be refitted as there was an issue with it. Didn't explain what problem is.

I have asked for a doctor to call me for an update as I am next of kin. They are usually very good and call me daily but I can only think that they must be very busy.

I would like help to understand the following:

A) is her agitation related to her sedation and/or being more aware than she was previously. Is it due to breathing difficulties? Is it delirium? How will this be managed by staff?

B) is the problem with traceostomy normal? What is going on? Is replacing it potentially dangerous? I am worried but trying to stay calm.

C) are our visits making things worse?

D) will the doctors need to increase her sedation?

Omg trying to stay calm, see this as set back but also scared, anxious and feel we are back on the rollercoaster.

Grateful for any guidance and will post update once I have spoken to doctors.

Thank you

[Sepsur]

Very tense times for you all & very distressing. I’d hate to be certain but your sister may well be experiencing some delirium - it’s not uncommon. Your visits will be helping to orientate her. I was so desperate for visiting times because hospital is also very very boring, noisy & exhausting in equal measure.

I hope her refitting of trachy goes ok, it does happen - obviously it’s not ideal, everyone would like things to run smoothly and be straightforward but few of us enjoy such a linear journey through critical care. She will be in the best possible hands at present.

[Beanyynwa in reply to Sepsur]

Thanks Sepsur. On the on hand I realise that there will be setbacks but when they happen it is anxiety provoking. I have not been able to speak with a doctor but nurse reported that my sister's oxygen requirement is up to 45%. He did not feel that she was agitated but confirmed that the traceostomy will need to be refitted and that a doctor will explain more. Doctors are busy on the unit today. I am visiting tomorrow and will talk to a doctor directly.

[FamilyHistorian]

Hi

I’m not a medical person so can only speak from my own experience. I had a trachy for about 2 months following heart op, pneumonia and sepsis plus other infections. They were constantly removing secretions every day. My O2 requirements also kept on changing. So

A) in my case the agitation and delirium was cased by the sedation. The delirium didn’t go for some time as I needed to be weened off and then the effect of sedation doesn’t just stop. I don’t think it can be easily managed by the staff as even when I was weened off it continued. They did put mitts on me to try and prevent me pulling out my tubes and hitting the staff.

B) Honestly fitting the trachy is dangerous. In my case it’s fitting was delayed because although they were going to do it whilst I was in bed there had to be an op theatre with staff available in case of an emergency.

C) No. your sister is in a world of her own despite what you might think. To a certain extent don’t believe what she says. If she tells you to go away or that she doesn’t want you to visit she doesn’t mean it. If she says she is being mistreated treat it with caution. If she is talking rubbish or being hurtful try changing the subject.

D) May be my levels of sedation were changed all the time. Even when I was being weened off they may have re-introduced more often than not for my safety.

Rollercoaster oh yes and it’s not over yet!!

Unfortunately you can get different views from the medical team and they tend not to be optimistic which is what you want. My family were lucky the staff were “honest” with them. For instance they wanted to know how long I would be in ICU and they were told we don’t know it could be months what we want is to get him stable first.

I have now been home for over a year.

If you want to ask any specific questions please ask either here or through messages.

[FamilyHistorian]

Shabina just let you know I am Simon as in Simon & Sue

[Angech]

She will be ok. Patients go through so many ups and downs. Good she is awake. Maybe ask about a speaking valve they put on the trach so she can talk, if it is possible. Don't worry so much about the oxygen needed. It will go up and down as situations come and go. Just take one day at a time, keep visiting as it helps her. Keep her calm and you show her you are calm. Prayers for you all!

[Beanyynwa]

Thanks everyone for your responses. They are so helpful. Much appreciated.

[Zeeetashhh]

Your sister is fine. The agitation comes from the patient waking up from the sedation and coming to terms that they cannot speak or move as they did previously. Every person that has a tracheostomy goes through agitation unless your an alien and have no feelings. The nurses know how to handle it very well the next few days your going to hear a lot about sedation getting reduced or increased as they are finding a fine balance for her not being agitated and her being more alert. You shouldn’t worry about agitation. The short visits are not always good as some patients react different with loved once and feeling sad and stressed when they see them leave in such a short time. But only you can tell if it’s good for her or not. Every patient is different.

The problem with tracheotomy is not uncommon, there are different sizes of trachys if your sister has a small neck or big neck the surgical team has decide which size to pick for her. They don’t always get it right first time but they will not tell you they got the wrong size hence you been told there are issues with the tracheostomy. If it was anything to worry about they wouldn’t wait till Monday.

Hope this helps

[Beanyynwa in reply to Zeeetashhh]

Thank you very much. That does help. 👍

[Gooddaysunshine]

I would concur with all the above comments. Also to say that I found with my covid-related tracheostomy there was the “double whammy” of being all over the place mentally because of delirium/medication/oxygen level issues, plus the intense frustration of not being able to talk to medical staff and family.And the draining of secretions is not pleasant but I understood it was helping my lungs to clear and repair.

So what she is experiencing sounds totally part of the rollercoaster.

I actually tried to write notes for the nurses but my writing was so shaky that they couldn’t read them...

Eventually they fitted some sort of gizmo that allowed me to speak croakily when they turned on a switch. It was used sparingly but allowed me to say such simple things as asking them to change the flavour of yoghurt as I didn’t like banana (sounds daft but these little things also cause frustration for a bed bound patient).

[Sepsur in reply to Gooddaysunshine]

🤣🤣 - yeh or warm strawberry yoghurt because I’d fallen asleep at the wrong time

[Mimi407]

You and i are at the exact same point. My dad got mittens today. He is angry then ok then cries. Its hard seeing him like this. He says he wants to go home and forgets everything. Visiting helps. Keep being there. My protip is be your sisters members advocate. I have been fighting like hell for pschy evaluations and additional workups. You are the only one in her corner. Let me know if you want to chat 😊

[Beanyynwa in reply to Mimi407]

Thanks Mimi. Went to visit sister today. Told she was doing very well with weaning off sedation and reduction of pressure. Doctors undecided about whether they will replace traceostomy tommorrow or try to remove it altogether. I feel anxious about both options. Trying not to get anxious about the doctors going too fast. Couldn't ask what happens if she can't breathe without traceostomy because he was talking in front of sister. Blood in her secretions from lungs which I am told is not unusual.

Sister was not happy today. She appeared sad and/or angry. Nurse said that sister told her earlier that she is fed up and wants to leave. I told sister that that was totally understandable and that as soon as she was assessed to be safe and well enough to come home we would bring her back home. Poor love was so down. She usually loves holding a rose quartz and other crystals in her hand but did not want them today. It was hard to cheer her up. Maybe being big sis, she was wanting me to take her home or make it better and I couldn't. Struggling with my feelings of not making it better. Time for a big cry so I can be strong tommorrow.

[Mimi407 in reply to Beanyynwa]

Oh beanyynwa, the blood secretions do happen. My dad had the same issue. It was very disheartening. Today i also visited and he was fighting the nurses and very upset. I ran to the hospital and he started to cry. He said he wanted to leave and said we had abandoned him. ( We visit daily). I have gone home crying as well. They will have bad and good days. Did you ask for psychiatry to evaluate her? Its mostly to give her meds to help ease her anxiety and depression. Anyone in their situation would get depressed. As soon as we are here for a bit he settles. I know its super hard but please know it helps them in the general sense. ❤️ sending love and prayers your way❤️🙏❤️

[Beanyynwa in reply to Mimi407]

Thank you very much. I feel a lot better after a big cry. It is totally understandable that she is fed up and depressed. So many issues drugs, pain, discomfort, lack of control, fear, sleep deprivation, boredom, delirium etc etc. She appears hyper vigilant and very much in survival mode can't do flight, can't do fight as in physical aspect and can't do freeze ( not my sister's way of dealing with things).

Hope that you're dad feels better soon. Sending you, dad and family love and will pray for you all to.

🙏❤🌈🙋🏽‍♀️🙏🏼

[Emmalowe1988]

Hello

This all sounds pretty normal.

My mum has just left hospital after 85 days in with covid, she was ventilated with a Trachy for 2 weeks in this time!

The delirium is awful, mums seemed to get worse as she’s become more aware of what’s happened to her, mum started on some anti depressants which helped her massively through this time, with sleeping, confusion and anxiety.

I wish your sister all the love in the world, I gave birth to my first baby while mum was ventilated, this last 3 months have been a living nightmare.

BUT, my mum is living proof of all of your story with your sister! So hang on I’m there, trust the process and give it time - that’s what I learnt

This was mum with hey family yesterday arriving at rehab xx

[Beanyynwa in reply to Emmalowe1988]

Hi Emma, what a beautiful photo. Your post and photo has given us much hope. Soooo pleased your Mum is doing well 🙏🏼❤. Congratulations on becoming a mum and welcome to your little one. ❤🥂🥳. We will pray for your Mum's progress to continue and for the good health and happiness of all your family.

My sister Z has made really good progress over the last few days. Doctors are undecided as to whether they should refit her traceostomy or remove it altogether later this week/early next week. She is not needing much help from the ventilator in breathing but they want to monitor her ability to cough up secretions. They have reduced her sedation.

Z was in a chatty and positive mood yesterday. She had a long visit from one of my other sisters. They had a good laugh and my sister pampered Z and painted her finger and toe nails.

Our Mum passed away on 8th February this year and Z became ill and was admitted to ICU on 26th February. I wasn't sure if she would remember that Mum had passed especially as she could not attend the funeral. I was really worried that Z might have forgotten that Mum had died and was anxious about when to tell her and how she would react. Z however does remember and she talked and cried about Mum's passing yesterday and how much she misses Mum. 😢😢😢. We have reassured and comforted her.

Take care and lots of love 🙋🏽‍♀️❤🤗😘🌈