Tracheotomy Trouble

[eddie1968]

Anyone woke up from their coma and found communication difficult ? Even after 3 days awake they wouldn't put a speaking valve in and expected me to write things down on a piece of paper on a clipboard. After 4 weeks of a coma and ventilation I didn't have the strength to write anything down at all. I was having vivid hallucinations and was in pain but as I couldn't communicate it they ignored me. I thought a tablet would have been a good idea as tapping keys is easier than writing. Anyone with any solutions or similar experiences should get back to me please.

[Luckyone]

Hi Eddie,

I was in a induced coma for almost 8 weeks only to find when I was brought out of it I couldn't speak as I had this tube strapped to my throat, a nurse told me I had been very ill and had a tracheotomy to help me breath, I was never offered a speaking valve just a clipboard and a piece of paper I remember the frustration of trying to hold a pen and write, it looked more like my 2 year old grandsons writing, the nurses were quite good at lip reading but my wife and family were no good at all so I would give up trying to mouth the words.

While in a coma I had some of the most frightening nightmares I'll never forget, then when awake the hallucinations took over when I believed the grim reaper was walking round the ward looking at everyone before taking someone, then a nurse saying he'll be back for you.

I found the worse thing was my mouth was so dry, I was given little moist sponge swabs to moisten my mouth and lips, I would try a suck every drop of moisture out of it and would have killed for a sip of water.

After almost 11 weeks I was moved from ITU next door to HDU where I had pay-to-view TV and internet access, still unable to speak so I kept a daily blog on my Facebook page much to my son amusement, I finally had my tracheotomy removed after 81 days with the first 19 days on a ventilator, being able to speak again after nearly 3 months felt very strange but a wonderful feeling.

I've since contributed to a research project with regards to using tablets for communication in ICU, I think some hospitals are now trialing the use of them which can only be a good thing as it can leave you feeling very isolated and frustrated when you cannot communicate fully.

Bill.

[Brea58 in reply to Luckyone]

Dittos !! Everything you wrote, I experienced it myself.

I too was so thirsty.when I was finally allowed the drink. I couldn't stop.!!!

Ice water never tasted so good.

[patchworker]

When I woke I didn't have a tracheotomy, just a breathing tube in through my mouth and down my throat. Absolutely horrific. For 11 days and nights.

That was more than 5 years ago, but I remember it all so clearly. It's so exhausting just moving your hand to write, and the nurse held the clipboard at such an angle that I couldn't see what I was writing. I just gave up trying.

And the nightmares. Terrible, dreadful nightmares. Just remembering them is frightening.

And the thirst. Longing for water, dreaming about water Desperate for water.

A tablet wouldn't have been any help for me, I wasn't familiar with such things then, and that wouldn't have been a good time to learn. But if I were there now, I think it would be very helpful.

[muncii]

I second the comments by luckyone and patchworker, and in my case, I don't think many of the nurses in my ICU had much idea about how frustrating and traumatic it is to be unable to speak. I managed to communicate by writing notes, but the sheer effort involved, and trying to make the note as short and succinct as possible, was enormous. So I think a tablet is a good idea.

The near total loss of one's bodily functions - especially the ability to speak - is still, to me nearly 5 years later, very upsetting.

But this website has been a great comfort, for example to discover that the dreams and hallucinations mentioned by eddie, are very common.

Again, I'm not sure the staff in my ICU were aware of this. I can still remember mine vividly but they now have less of an emotional impact, fortunately.

Eddie I hope your recovery goes well.

[rememberingmom]

My mom could mouth words (once the tube down the throat was replaced with the tracheotomy). We had a terrible time trying to lipread. It was so frustrating for her and for us. Some of the nurses were good lip readers and others weren't. (At least some things were very clear like "I love you".) They did give us a paper with the alphabet printed on it in large letters, and sometimes my mom was able to tap out sentences on that. (As she got weaker, she lost the ability to do this.) I ordered two communication boards online that had pictures (or words) of many of the things you might want in the ICU (suction, wet sponge, pain meds, etc). That seemed good in theory, but by the time we got them my mom wasn't able to focus on them. It might be good in general though. These are what I ordered:

amazon.com/gp/product/B003J...

amazon.com/gp/product/B00HN...

[salfordgirl]

I can really relate to what everyone else has said. I was in a drug induced coma for 7 days following surgery for a perforated bowel.I was then given a trach & woken up.( patchworker I to had that awful thirst I used to imagine the drinks isles all the drinks I had never tried, it was made so much worse by the staff drinking their Cokes & tea in front of me ) I remained on the vent for the next 32 days mostly in pain with a tube down my nose to try & control the nausea & vomiting.as well as the trach I couldn't move so writing was impossible. My daughter was the only one in my family who could lip read, some of the nurses made an effort to try & understand me some couldn't be bothered. This inability to communicate made everything so much worse.This happened 7 years ago, so iPads weren't around then, I think it would be fantastic to make them available in I CU, kindles would be great as well, I was to weak to manage a book or a magazine, I couldn't even turn a radio on or put the head phones back in my ears when they fell out, so had nothing to help pass the very long hours.On a positive note the bad memories do fade. Best wishes to everyone &a good luck in your recovery.

[Brea58 in reply to salfordgirl]

I was there! I was so thirsty and the tv was on constantly showing coke commercials and I had was a little sponge! My first day I was able to drink, I couldn't stop

[eddie1968 in reply to Brea58]

I actually offered my sister £200 to get her to buy me a can of coke lol. Desperate measures. No TV in ICU though.

[angelrock]

I had one as well however, don't remember it very well. What I do remember are the nightmares ans hallucinations in particular spiders.

My desire for a drink of water was so desperate, all I had was water adsorbed on a small sponge uck, my partner and family were excellent and helped speed up my recovery.

The staff too, were exceptional and assisted me throughout this horrendous ordeal and I am forever grateful to their kindness, compassion, empathy and care.

Kindest wishes to everyone here.

Angie

[Brea58 in reply to angelrock]

I as well was so thirsty for anything. The sponge didnt do anything for me,I only wanted more. When weeks later when I was finally allowed to drink, I couldn't stop! Ice water to me was like Euphoria to me,I couldn't stop drinking it!

[eddie1968]

Thanks to the replies. Yes the thirst - I remember it well and just getting swab sticks in my mouth. When they put a speaking valve in my sister said I would give her £200 for a can of coke - I don't remember saying it and didn't really recognise family members as I was a bit out of it with delusions and hallucinations etc. Apparently I thought I had won the lottery and I had the ticket stashed in my bed and the nurses were plotting to bump me off and steal it lol. Must have still been suffering ICU psychosis even after 4 days awake.

[angelrock in reply to eddie1968]

I still have my scar after three and half years!!

[dall05]

Hi Eddie, it seems quite a few of us have had similar experiences. I was sedated and ventilated for 4 weeks and had the same communication problems. I thought maybe I could write but the pen had a mind of its own when I had the strength to lift it.

As for thirst, they did let me suck ice cubes that my wife brought in. They were pure heaven but I was limited to very few each day.

One day they were allowed to go and get me an ice cream lolly and returned with a Twister. I was told in no uncertain terms to only lick it so I nodded in agreement. Once that lolly came within biting distance I seized my chance and took a great big bite. Panic ensued all around and I was shouted at to spit it out. My daughter who fed me the lolly said I looked at her like a naughty school boy.

Well it might of helped if someone had actually taken the time to explain it could be dangerous for me, I was totally unaware of why I was being deprived of drink and struggling to communicate with all these crazy people around me.

The dreams and hallucinations were still coming thick and fast but lucky for me they were actually quite funny and almost enjoyable at times.

I would fly in my very expensive bed in a squadron of other beds. When on the ground a V8 engine would appear and it would turn into Chevy bed, tuned to the hilt and very very fast.

I dreamed, while sleeping on a beech down in Cornwall the Matron turned up and made me drive it into the back of a lorry and return it back to ICU because this bed was worth £30.000 .

I also remember dreaming of walking again across green fields with my dad and his dogs. This one actually came true and was a magic moment around six months later.

These dreams were nothing of course compared to the ones I had while under sedation, they were so incredibly real as you would know yourself.

Its good to be able to share our stories amongst others who really understand what goes on in and after sedation.

Tony

[AnnieBananie]

Yes! I thought maybe a small laptop would work since my writing was illegible. I mimed typing for my husband to share my thought. However, when I actually attempted to use the computer my brain was not connecting to my hands and my fine motor skills were much too shaky. Just didn't work for me. It was incredibly frustrating and I believe my needs were somewhat ignored because I couldn't communicate.

[eddie1968]

I wonder if any staff from ICU Steps could inform the community of any progress in the solution to this problem in particular ? This area definitely needs research and possible funding for solutions. It's almost like having a disability on top of what your other medical needs are. Communication with family and nurses/doctors is essential when awake and in ICU.

[Luckyone in reply to eddie1968]

Hi Eddie,

As far as I'm aware some hospital ICU's are use iPad's for communication for patients but as funding can be a problem I'm not sure how many hospitals will be able to supply this service.

ICUsteps are working on providing an updated mobile/tablet app with information for patients and relatives which may also have a facility for keeping a patient diary, it's still at an early stage at the moment as security of a patient diary is paramount in the development, unfortunately at this stage I don't think it would be able to contain a communications aid.

I will keep the community informed of when the app is available.

Bill

[Pandora8]

Hi Eddie,

As an ex-ICU patient I recently was asked to take part in a research project about Communication Aids for ICU Patients by King's College Hospital ; They are working on developing an App. for tablets to make it easier for patients to communicate. I can certainly sympathize with you on how difficult it was to get understood by others and took so much of the little energy I had.. My husband kept some of the sheets I wrote on and it's obvious by looking them that I had a real struggle to write/explain things ! Some of the words are Illegible as I was writing letters over other letters . Luckily my husband and some of the nurses were very good lip readers but some other staff weren't at all and it was so frustrating. It took about 5 months for my voice to fully return to normal but I'm still unable to return to the choir I had joined a few months before going into ICU as my singing voice isn't constant enough..It's been improving though so you never know ! Wishing you all the best.

[eddie1968]

Thanks for everone's input. Yes even in 2015 it is still not a problem that has been solved but it has been flagged as one. I would even donate a tablet or raise money for some in the NHS but alas without the software/apps seems a bit early. Now that I am physically fit now I could do a parachute jump or something similar to get some money raised.

[Brea58]

Thanks Eddie of your the one responsible for this site. It's is so good to have others who went thru what I did to chat with.

[eddie1968 in reply to Brea58]

Yes Brea, it’s something that needs a solution. Take care.

[Brea58]

Thanks Eddie for replying to me.

I like reading the blogs realizing I'm not alone and can relate to others