Dad 8 weeks on - tracheostomy for nearly 3 weeks

[Psp007]

Hi all,

I love this group esp as some of you are going through what we are going through and some of you great people have come through on the winning side!

So dad's sedation is being lowered and we got out first smile and some response on Saturday. We did all get very excited and started to ask him to blink and try mouth words. When my son tried to speak i think he got emotional and he saturation fell. So Nurse advised us to let him rest and that dad was getting emotional.

After all these weeks and no response this was amazing!

They say hes stable on 50 % oxygen (was on 45%) peep around 7 and pressure still quite high (consultants at this hospital don't give us numbers!). They have stopped the steroid and now extending the antibiotic.

Nurse said he was the best she has seen since the transfer in terms of response and stability which was nice to hear. Obviously we never hear this from any doctors, but we did get 'for someone so sick he is not doing too badly. Numbers are bad but for critical ill its ok?!'

I desperately want my dad to turn that corner and pushing for weaning. They say they are focusing this week on reducing the sedation. He is off the Propofol and put on another which is more a relaxant.

After nearly 3 weeks on the Trach, I want to hear some progress or that he can have the valve to speak to us or something. I'm desperate not to hear word 'static' as I know the longer he is on the vent the weaker he will be.

I just feel so on edge, emotional and worried what he may e feeling now he's semi conscious. He will prob feel so isolated and alone it breaks my heart.

Not sure why I am writing this but I know this group gives me a lot of strength.

I'm looking forward to the ICU steps call this eve too.

Lots of love and strength to you all.

Priti

[FamilyHistorian]

I'm sorry if I repeat anything. It sounds as if the steps going forward are bigger than those going back. We never did numbers when I was in ICU although I have recently received the hospital notes which I am going through for the frst time. When I do the second read I might be able to comment on the PEEP score etc. When I was given the voice box for the trachy I was only allowed to have it for short periods of time so I found it very frustrating when I wasn't able to speak. Writing messages was also difficult because whilst they were clear to me nobody could understand them. The words were in the wrong order, misspelt in another language. And don't forget when he responds he may still be under the influence and may not remember the conversation and he may only talk about his reality not what if really going on. I think my wife will be there tonight.

[Psp007 in reply to FamilyHistorian]

Brilliant thanks so much, it's so good to know from someone who has been there and come through.

[LeopardGecko]

It sounds like your dad is doing well and that first smile is amazing 🙂My husband had his tracheostomy for almost a month before I first heard him growl at me and I was so pleased! I was so desperate to hear him speak to me and it felt like I had to wait forever. The speech valve was really hard work for him and a different way of speaking to learn so he was very quiet at first and I found it hard to hear him over Skype.

The staff were pretty good with him when he couldn't speak (the speech valve can only be used for short times to start with) so they had an alphabet chart to help get certain information from him as well as attempting lip reading but I know it was frustrating for him.

See you tonight. Sarah

[Sepsur]

Hey @Psp007 - check your private message box - FB group address 😀

[Psp007 in reply to Sepsur]

Thank u!

[Sepsur in reply to Psp007]

You’re welcome

[Bobbinlady1]

Hang on in there -my husband has had a very similar experience. Being on a ventilator for so long means they are weak and so progress will be in small steps over prolonged periods of time and the effects of the sedation seem to last well beyond the time it is stopped. Whilst 'static' is not what you want to hear it is a positive in as much as the situation is not deteriorating. From what you write the signs are good and you just need to be patient. We are now in week10 and my husband has been off the ventilator for 5 days and has been moved to a normal ward. I hope your dad will soon follow suit.

[Psp007 in reply to Bobbinlady1]

This is do encouraging so thank you and so pleased of your husbands progress! I hope my dad will make some progress soon. Today they did a drip on the central line so they don't have to keep jabbing a vein and for that gave him sedation. I feel last 2 days no response he just sleeps most of the day. They say they reducing sedation and it was only Saturday dad was responding. Praying for some positive news in oxygen too. It stays at 50 %.

[Froggy4711]

My aunt is at the same stage. No profodol in 7 days. Moved her arm yesterday and opening her eyes when called. Has a tracheostomy nearly 2 weeks and on ventilator for 3 weeks previous. I get the same reply of she being static and it is frustrating but I suppose no news is good news and we have had enough bad news. Its a very slow process and here in Ireland we are not left in to see them. Her breathing is between 30 r 40 breaths per minute and this has come down from 50 t0 60 last week. I think it's just going to be a very long process but we must all be hopeful. I find certain nurses give more info than others and that's why some just say no change and practically hang up. Also how ofter do ye speak to a Consultant? I'm lucky to speak to them once a week.

[Babycrazy in reply to Froggy4711]

I’m a member here from Ireland and having similar experiences with nurses and doctors. Totally depends on the day what information we get or how it is communicated to us. The not being able to visit is hands down the worst part. Thinking of you and your family.