My dads severe pain with a Tracheostomy.. he is a covid patient, anyone else experienced this??

[Maddie232425]

My dad has been in ICU with covid for 32 days and came out of his coma 7 days ago. He is still paralysed and obviously can’t talk because of the tracheostomy but he is completely fully aware of his surroundings, understands absolutely everything that is asked of him.

We managed to understand that the pain was experiencing was “big pain” “10 of of 10” “very bad pain”

Is this normal?? Could anyone help us understand what might be going on? Could the tube be pushing on something etc?

Any advice would be greatly appreciated.

Hope you are all hanging in there and to those who have been through this absolute nightmare I’m thinking of you all.

X

[Ferham]

Hi Maddie.

Does your dad say where the pain is ? For us my husband was saying his chest , legs and feet were hurting. He had a heart attack whilst in ITU and has critical nerve end damage in his legs and feet. That's where his pain was .

His throat was also painful, hardly surprising when you think a tube has been placed there for several weeks .

My husband wasn't paralysed when he came round but had lost all his muscle so was just floppy and unable to lift, wave his hands, it was all too much of an effort .

I read somewhere that some hospitals use the alphabet to help with communication, and build the word up etc, whilst they are in this stage. This site is full of remarkable ,courageous survivors .

xx

[Maddie232425 in reply to Ferham]

Hi thank you so much for you message, I’m so sorry for what you have been through and you continue to go through.

Thank you for the advice on communication, I think we can start asking about our options with that now.

We will speak to him again tomorrow and try and determine exactly where the pain is.

Could it just be the lungs healing?

Just worried it was something wrong with the tracheostomy.

Xx

[Ferham in reply to Maddie232425]

Thanks Maddie, we are one of the lucky ones, we have come out the other side . I don't recall my husband having lung pains when they are recovering (they still are now 6 months on ).

I would just try to establish where the pain is coming from, and it's wonderful he is out of the induced coma. I'm delighted for you all.

The ITU team will talk to you soon about a speaking valve being placed into the Trachy, so you can hear his voice.

We were lucky here as my husband valve was fitted quite quickly after he came round, some waited much longer due to ongoing medical issues - sorry I don't know anymore here, but hopefully some of members from the first wave maybe able to help out a bit more here ?

I have tagged a few of them for you x

Bigyellow HopefulA DrARDS

[Maddie232425 in reply to Ferham]

Sorry about my late reply it has been a difficult week with dad. Thank you so much for your message it really means a lot!

We asked a lot of questions and told the doctors to take his pain seriously I think they thought it was delirium but I think because we knew him as a family we could tell he was in real pain.

He got a different model of tracheotomy put in and as soon as that happened he was out of pain...

something must have been wrong..

We are slowly seeing him come back to us

It’s a long road ahead but we can see the end xx

[Ferham in reply to Maddie232425]

That's wonderful, you are getting your dad back, the road may be long, but you have lot's of supporters on here to hold your hand upon the way .

[stevet11753]

As Ferham has said, you need to determine where his pain is. My trachy gave me no pain or discomfort that I can recall. Keep well.

[Maddie232425 in reply to stevet11753]

Thank you for your message Steve! I’m sorry for what you have been through and I’m so glad that you have made it through.

We’re you a covid patient by any chance

[stevet11753 in reply to Maddie232425]

Hi Maddie, no, I wasn't covid, but I wouldn't expect it to make a trachy more painful, tho I'm no expert on this and maybe there is something going on. Hope your dad is more comfortable soon.

[Maddie232425 in reply to stevet11753]

Thanks for your reply Steve,

Sorry mine is so late I haven’t been on the site for a little while.

We managed to get the doctors to take the pain seriously and they changed the model of tracheotomy and no pain!

So glad we got to the bottom of it.

I hope your are well, all the best 😊

[stevet11753 in reply to Maddie232425]

That's great to hear Maddie. So it was the trachy! Hope your dad's more comfortable now. Best wishes to you all

[varmenta83]

First of I am very sorry to hear about your dads situation it truly is heart wrenching the uncertainty the tears the fear a lot of emotions. Secondly i am happy to hear that he is aware of his surroundings my dad he was in from 5/2 till about mid August he also covid patient and had a tracheotomy I want to say it took him a good Two weeks for him to even move his limbs and then about mid August he sat up for the first time. Everybody is different and also trying to understand what happened to them it must be brutal what they went through I have found this website absolutely amazing the support and unconditional love that I felt will never be forgotten. Everyone had great advice one nurse told me something that I will never forget is that I needed to be strong and healthy and I share this because all of this affects us too. Take care and keep us updated pls send positive thoughts and prayers to you and your dad everything in its time ❤️

[Maddie232425 in reply to varmenta83]

Thank you so much for your lovely message ❤️

It makes it so much easier to talk to people who actually really understand what you’re going through. This site has been such a support.

I am so sorry for everything you have been through. This is a real trauma for of course the patient but also the families.. Iv never felt emotions like this it’s a complete roller coaster..

He is doing better and we are able to communicate with him through lip reading and using the alphabet to make words he wants to say. He is moving his arms and his legs are slowly coming back to life.

It’s such a long process but we are getting there.

So much love to you ❤️

[FamilyHistorian]

Hi Maddison

I am 72 and didn’t have covid. I had pneumonia and a number of other things including a failing aortic valve which was operated on just before Xmas ‘19. I wasn’t tolerating intubation so a trachy was fitted just after Xmas. Apparently a voice box nerve was damaged when it was fitted. I was out of it for nearly 2 months and my wife tells me I was in a lot of pain in my joints. Once I came round and was ready I was fitted with a voice box but was only allowed to use this for short times because of the muscle wastage which includes the vocal chords. I lost about 5 stone fat and muscle and was very weak. I had to learn to swallow, talk and eventually eat. Additionally I had to gain strength to move. I hated anything to do with pointing or writing. In fact when I did I had to use my left hand and the words were spelt back to front and in another language. It was very frustration because I knew exactly what it said and no one else did.

The nerve ends in the legs and feet do die but gradually come back I just have to be very careful as I prefer bare feet so I don’t know I have hurt myself until I see the 🩸.

I came out mid March, recovery both physical and mental is slow but progressing. Just hope your ICU provides rehab not all do. The rehab needed needs to take into account that you have been in ICU. I was lucky and found ICUStepsChester which provides via zoom appropriate exercises and support and helps any one in the UK.

Don’t forget that at this time it is really important for you to look after yourself - harder times are to come - don’t forget if he is insensitive towards you it’s not him but the drugs.

I hope he is able to enjoy the festivities which didn’t happen for me last year.

[Maddie232425 in reply to FamilyHistorian]

Thank you so much for your reply!

It means so much to me that you have taken the time to tell me a bit about your story.

I’m so sorry for what you have been through, you really are amazing for getting through what you did. What a very scary and difficult time you have been through.

We are able to communicate with him through lip reading and going through the alphabet to make up the word he wants to say which has been incredibly helpful.

He seems to be mentally aware of everything and can spell etc. His limbs are taking some time to come back to life but we are getting there.

His lungs are bad and we think he will still have a few more weeks on the ventilator.. it’s been 6 weeks already... but the weaning process is starting verrrry slowly.

Thank you again for taking the time to reply to me.

I wish you all the best! And have a lovely Christmas this year 🎄

[FamilyHistorian in reply to Maddie232425]

Thank you. I’m now starting a strange period as I am at the beginning of an anniversary period so it is very emotional doing things that I didn’t or couldn’t do or I didn’t know I did.

[Sepsur]

Try and establish where the pain is coming from - whilst the trachy was uncomfortable / it didn’t give me pain as such. My whole body ached. Some procedures were really unpleasant - suctioning the lungs for instance. Sitting in a chair was agony because I’d lost all my padding on bones - so I felt every pressure point at the base of my spine- was he sitting up when he told you of pain?

[Maddie232425 in reply to Sepsur]

Hi there

Thank you so much for taking the time to reply to my post! Sorry for the late reply we had a difficult week with dad.

So we located the pain it was definitely in his chest and he kept saying the pain was 10!

The doctors finally took it seriously and gave him a new tracheotomy, they fitted a different model and he then had no pain... I think we lost about 5 days recovery time because of that 😰

Was great to know he was out of pain but at the same time we knew how long he was suffering for unnecessarily.

I want to say I’m so sorry for everything you have been through... what an ordeal you had to go through... I think this site is so brilliant for bringing people together that do really understand each other. When I try and explain to people who ask about how he is I don’t think they will ever truly understand what he has been through.

I’m so happy for you that you have come out the other side I want to jump for joy for you!

I wish you all the best,

Maddie 😊

[Sepsur in reply to Maddie232425]

We are living proof of how resilient the human body is too. We’ve come through hell and are still alive & kicking.😊. Hoping your father has a better week.