Hello world from newbie Kit

[Kit10]

Hi. Posting from a hospital bed where I am very frustratingly slowly recovering from a stay in ICU.

[FamilyHistorian]

Wow thats amasing that you have found this site whilst still in hospital. When I was i ICU that was the last thing I could have done. There are loads of us on this site with a range of experiences. So if you have specific questions I am sure there will be answers!

[Sepsur]

Welcome @Kit10 It is slow I am afraid but hang in there, many of us have been where you are and we have the scars to prove it 😊

I don’t know how long your ordeal has gone on but it can feel daunting for a long while. I knew that I had a huge mountain to climb to get back to anything like normal. Every tiny step forward was met with a giant knock backwards ( it seemed) as I picked up infection after infection.

The staff in ICU were brilliant and thanks to their care & dedication, I’m still here.

You may find that the drugs will send your emotions a bit haywire, you may feel beyond exhausted.

Try and do your physio - I saw that as my ticket home.

Let us know how you get on.

[Kit10]

I was in ICU Jan 17-29, now in a rehab unit. What amazes me is it took 4 months for anyone to tell me about icusteps. I scrounged the loan of an iPad and find it very frustrating. Give me a mouse and keyboard any day.

I am told I was found by a neighbour very cold on the floor. I never knew hypothermia could be so serious in the long term, I mean, I knew it could be fatal but not that surviving it could leave anyone in icu. Don’t really know how close to dead I was.

The last thing I remember is Xmas, so no idea how come I was on the floor. In fact there is a list of things a mile long I don’t know and nor it seems does anyone else.

Physio is the highlight of my day and I often have a good laugh with the physiotherapists. Pity so little else to laugh at. Pity jokes are banned here...

Don’t trust this iPad with a longer message thou I’ve plenty more to say. Will post about the FRUSTRATION of not being able to speak some other time. I can now but had a trachy...

Kit

[Sepsur in reply to Kit10]

Hey Kit

I completely understand. I had a trachy for a few weeks & the annoyance of not being able to communicate.

We have a weekly on line drop-in which you are welcome to attend. Zoom allows you to type in questions until you can speak. There is a rich community out there which can help you on your journey.

icustepschester.org

[Kit10 in reply to Sepsur]

Sepsur

I’d put it a lot more strongly than “annoyance” except that I understand that rude words are, rightly, banned.

Thanks for the invitation. Alas I do not have the technology to use Zoom. BTW I can speak now, the trachy was 4 months ago, though the memory is still fresh.

The sort of questions I have are mostly the ones no one can answer e.g., what DID I do in January.

One q someone might be able to answer is this:

I have lots of feedback I could give icu staff about how they could have done much better to help me communicate when I couldn’t speak. How can I pass that on? Will anyone be interested? Will anyone even try to act on it? Or is it so unusual to be mentally alert but unable to speak that I’d be wasting my time?

Kit

[Sepsur in reply to Kit10]

We are speaking with an ICU nurse from Belfast who is developing an app that can lip read.

Before you dismiss the idea of zoom, we would happily talk it through. Why not email -

[e-mail]

[Kit10 in reply to Sepsur]

Sepsur

I do not have the appropriate technology to use Zoom.

Sounds like no one would be interested in my comments. I won’t bother then.

Kit

[Sepsur in reply to Kit10]

I think they would very interested in what you had to say - there are all sorts of research projects going on all the time - I was giving you an example of a research project at present that would be very appropriate for what you have experienced.

[Hidden in reply to Kit10]

I'm not an ICU nurse, but my mom currently has a trach (very slow weaning process 5 months so far) and would be interested in hearing any advice you might have for communicating with her when the RT/SLP is busy with another patient so hasn't come to put on the speaking valve yet.

We only get 1 hour and I hate 'wasting' 15 min waiting and I know it frustrates her.

[Kit10]

Kate

5months not speaking OMG!!!

Advice? Gladly, if it helps anyone.

I was mentally alert but couldn’t speak. I could nod and shake my head. I could spell out messages by someone going through the alphabet and me nodding when they got to the right letter. It was slow. My advice would be:

Be patient- if you find it frustrating she will find it10 times worse.

If you do the same, include space/end of word and ./end of sentence. Numbers and punctuation may be useful. You will also need a way to go back and change or delete letters.

Write down each letter as it’s chosen, where she can see it.

If she can control her fingers let her point. If she can type, try writing qwerty not abcdef. If she’s fluent at texting try in the format of a phone number pad.

B clever re using abrevs n txtspk.

Try emojis.

Use predictive text if possible, or try to guess what a word is without finishing her sentences for her.

If it doesn’t make sense give her time to explain.

Can she write? A chunky felt tip pen is easier than a ballpoint.

Probably your mom is a nicer person than me - given a chance I would have spelled out something VERY rude words. If she does, cut her some slack.

Check she can see ok. I was seeing double so nodding at the right letter was tricky.

Later someone showed me an iPad ap with a voice synthesiser, predictive text and preset subject for conversation. I thought “If only they’d had that in icu.”

Ask her for her ideas about how to communicate more easily. If she’s as alert as I was she will have some.

They tried showing me picture of “how do you feel?”

They were so bland they were insulting. I was not sad, I was devastated. I wasn’t afraid, I was terrified. I was 10x frustrated. I was bored out of my skull. If she is anything like me she will appreciate new things to think about. A book of crosswords and other puzzles was a very welcome way to escape - is she up to that? If she can read, try books or magazines. Could she use a phone to text or email.

I hope this is helpful. If she’s still too ill to be that alert I’m sorry, I can only speak from my own experience.

Kit