Hey guys! Just another question. I haven’t read a lot about this topic, so I thought I’d just make another post about it. So my dad was taken off of the vent this week. He has to push really hard to get anything out, which a lot of that I’m sure is attributed to the weakness. But his voice is so soft and can barely hear him. They still haven’t done a swallow test because they want his voice to clear some first, so he’ll have a better chance at passing the test. He will try to talk to us and we can’t understand a lot of the times and he gets so frustrated. I know everyone is typically different but wanted to know your experience yourself or with a loved one and them not having a voice. I know this is pretty common, but how long did it take to start being able to talk again?
Voice after coming off of vent: Hey guys! Just... - ICUsteps
This was an incredibly frustrating time for me and my husband. We had really looked forward to him speaking and us having a normal conversation but I found it so hard to hear what he was saying. I think it took a week or 2 before he became clear enough to hear and then gradually improved over time as he used the speech valve more and more.
About 7 months after first using the speech valve and 6 months after having the tracheostomy removed, my husband's voice is still a lot softer than it used to be and he finds it hard to raise his voice (or sing) but it is steadily improving.
I had a trachy which made talking hard work, the would turn it he cuff up & down a little while later & I could talk very softly- would get furious because no one could lip read or read my (illegible) handwriting - it didn’t stop me getting pathologically furious.
Sometime later they fitted a passy muir valve which enabled me to talk louder for 20mins/30mins.
Eventually my breathing & voice got stronger as my diaphragm redeveloped- again it’s down to good physio 😊
I have another question for you. I know during all of this my dad has developed bad anxiety. So this morning we called for an update on my dad. They have been trying the biPAP machine at night and high flow nasal cannula during the day. They went to take biPAP off this morning and put the high flow nasal cannula back on and he couldn’t breathe. It’s like he couldn’t breathe through his nose. I did notice yesterday when we were up there, that around the nasal cannula was getting crusty from it running with discharge. They said this morning when they put the nasal cannula in and he couldn’t breathe through his nose he started taking shallow breaths and trying to get up out of the bed and everything. So they’ve tried to calm him down and gave him a sedative. So now they had put him back on the mask bc he could breathe through this mouth. They’ve ordered a chest X-ray to be sure they’re not missing anything but maybe thinking it’s bc his nose is very stopped up. Did you experience this or have you heard of this?
Sorry my friend, but maybe he has a little sinus infection or something - that’s about the only type of infection I didn’t get or UTI
We think it’s anxiety. He’s been trying to get up and move and get out of his bed. He’s now telling them he can breathe out of his nose. Mom said she thinks he’s mad at all the nurses. They did that chest X-ray and it looks the same as the last, so nothing has changed there. Did you experience anxiety? I’m sure it’s his delirium as well. So it’s probably a mixture of both.
“Sometimes fluids, chemicals, and toxins in the blood will make a person sleepy, disoriented, hostile, combative, or even unarousable (comatose) . Nutrition, fluids, electrolytes, dialysis, and other therapies may be needed in order to regulate the blood .
While the person is not talking or is in a deep sleep, it is really beneficial to
keep speaking to him or her . You can help by talking in soothing tones, telling stories, and supplying the patient with normal information to keep the brain active, yet calm . The voice of someone the patient knows is helpful in most cases”
Ok, thanks for the info! I appreciate it. Makes sense that your mind goes through all sorts of things coming off then sedation and other meds. I know he was on fentanyl for a few days as well! They just stopped his steroids yesterday, so could even be having an issue coming off of that for having it so long? Thanks again!
I guess it’s pretty common for them to adjust his oxygen up and down after doing physical therapy, correct? I know that it’s fluctuated in the last couple days. They’ll turn it down and then have to turn it back up a little to help him. Did you go through the same?
Many times - my blood pressure plummeted every time the nurses turned me at first - so I would need extra help - slowly slowly I got stronger, so did my heart & lungs - they had failed afterall
Oh wow. Yea, I assume till he gets a little stronger all around, they’ll have to adjust it. He did PT, OT, and ST today. He refused to sit on the edge for speech therapy today. ( he’s still in his delirium stage right now) Pretty sure he’s was worn out from PT as well. If he was all in his right mind, he wouldn’t have refused I don’t believe.
I cannot tell you the level of exhaustion we feel - it is all encompassing.
The only time my body was remotely comfortable was when it was horizontal
It is very frustrating. I was only allowed to use my voice box for a short periods. Staff used to pop the head around the door and say we hear you can speak and of course when they came I was off it. You have to concentrate very hard to use it and it is soooooo tiring. I know this sounds rrally daft but breathing is really important and with me they often sedated me to allow meb to breath. At this stage I don't think anxiety comes into. I was in my own world and a numer of times I was able to excape but I was always caught. Once in Bristol NOT. It sounds as if he is suffering from delirium it just doesn't go away.
I used to have a distinctive laugh, that has gone but I can still laugh. If I sing I have to be careful it hurts and makes me cough. - I'm not saying I could sing in the first place.
When the trachy came out I had to put pressure on the wound if I coughed or spoke to protect the healing process. In my case the wound wasn't stitched up (and I believe that is common practice) and although I was told it would take a week or so to heal it was more like 3 weeks and had to be dressed once or twice a day as it is wet and smelly.
I had terrible trouble passing the swallow test, I got myself in such a state over it I failed each time. SALT won't let you move on until you pass it.
I was a week or two before I could talk and experienced bad dreams and hallucinations . It has been about 18 months and I still do not have my singing voice back. Being an organist and pianist , it is very frustrating. The life support had so many tubes coming out of my body and three in my neck so there is quite abit of trauma.
Oh goodness! Yes, it has to do quite a bit of damage there. I was telling some of the others he is still in that delirium phase too. I just hope he can get stronger and heal soon.
I pray that he does better as well. I also suffered delirium and told people that a was a rock star, pregnant with eight babies and all kinds of stories. My husband and acquaintances just went along with the stories until I started regaining bits and pieces of reality . I know thoroughly remember all these stories with were quite embarrassing. This, however is very common we just need to have patience and support. Take care and stay safe. Elsie
OMG I’m sooo relieved that you’ve shared this🙏 I made such a total dick of myself 😳 I’m ashamed that I might bump into my ICU team!I had no Covid19 symptoms whatsoever so couldn’t understand how my test was positive? I told them I’d recently been diving in the South Pacific so might have caught it there?? No idea 🤷♀️ where I got that idea? Then I told them how I’d just finished filming a small role in a movie 🎥 so must have caught Covid on the movie set??🤦♀️ I’m a retired Bank Manager ffs😳 When a nurse thought she recognised me I said that may have seen me recently on tv on University Challenge??🤷♀️ Or that I’d previously been in ICU in South America where the nurses had abused me and emptied my bank accounts.
Oooh wow! How long did all that last?
The dreams that you have whilst in a coma are mega realistic!! I have blocked out everything that happened before I crashed but I can still recall every detail about my dreams. It was maybe a month? Before I could accept that they weren’t true. I can remember what I ate and what it smelt like on that imaginary movie set😳 I’d wake up shaking during the night running from the imaginary nurses who abused me in South America (I’ve never been there btw). I became paranoid thinking that my medical team & family were just trying to brainwash me into believing that they were all dreams and didn’t actually happen😳 at one point I was searching online trying to find the people I met in the South Pacific & on the movie set! I’d totally forgotten how bad it’d been until writing this to you now🤣😂 so don’t panic thinking that your Dad has suffered brain damage or has Dementia 👍 my husband wrote a list that I kept next to my bed. It just said something like ‘my name is Moe Hagan. I am a 53 year old medically retired bank manager. I have 20 year old twins. I’ve just come home from hospital etc etc so whenever I woke up (I was confused every time I woke up) I could just repeat this mantra👍 My family & I cope by seeing the funny side of it😃 they constantly take the Mickey out of me claiming that I owe them money and must have forgotten 🤣 or what was my trailer like on the movie set🤣
You do not need to be embarrassed when you see a member of the ICU team as these stories are very common': especially the ones about being kidnapped. I was so scared to fall asleep because I did not want to have anymore dreams. I talked to the surgeon who operated on me and told him he could probably write quite a book on this. He told me because of doctor -patient confidentiality this would never happen. But, I think more people who end up with delirium after being on life support or a coma should know what to expect. Sharing our stories with each other is a great way to know we are not alone. My last very vivid dream I woke up and told my friend that the hospital had a secret stem cell lab in the basement and were experimenting on multiple births. I was part of this and was pregnant with eight babies. Four of which I would have to give up for adoption. I was so excited and scared I could not wait to tell my husband. We are both previously divorced and he always wished we had met sooner to have our own children.I was telling everyone who came to see me that I was having eight babies. Some actually believed me. The doctor on call that weekend got my walker and said let us go for a short walk as I was not to get out of bed without assistance. She was a very nice person and asked me how did I think I was pregnant. I told her about the underground lab and the experiments going on. First of all she said Elsie think about your body and how it might be possible to have a baby. I got to thinking well I had my tubes tied, had cervical cancer after my son was born and a complete hysterotomy about 15 years ago. Then something clicked and I knew it was impossible to have babies anymore. I felt so embarrassed the doctor was very comforting and told me that my visitors understood this was delirium I was experiencing. I even called my son in Toronto to tell him he was about to not be an only child. He called my husband and thought I had lost my marbles. Just thought I would share this as it is now quite funny in some ways. Maybe all of us together could document all our stories . ICU and me!!!! Got my covid shot yesterday hope you are all doing fine. Elsie
Thank you! I’ve been contemplating getting mine, just worried about any side effects or adverse reactions is all. But he has said some crazy off the wall stuff and has been very agitated. I agree, when you guys share your stories, it helps me for sure! I know they help a lot of people!
I received the Pfizer vaccine and did not feel a thing.The nurse told me the next day my arm would be sore and it was. But, by noon everything was back to normal. I have had a friend who got the moderna and she experienced side effects such as nausea, chills and headaches as well as fatigue for about five days . Everyone is different regarding side effects but most that I know suffered very little with Pfizer. Wish everyone good luck and hope they do decide to get this vaccine as if infected with covid it will not be as bad. Stay safe and just because you are vaccinated does not mean to disregard safety protocols.
I didnt have a tracheostomy but I was on a ventilator it took me 4 months to get my voice back to something approaching normal. It was massively frustrating I felt like I was shouting at the top of my lungs but barely making any noise the more he tries to use his voice the quicker he may recover.
I hate it for him. I know he was getting frustrated trying to talk to us too. Which he is still in the delirium phase so sometimes you really don’t know what he’s saying. Last night when my sister went to see him she said it seemed like you could hear his voice maybe a little more clear. The day before when I was there it was still so soft and raspy. He has to really put a lot of effort into getting it out too, just because he’s so weak.
Yup. Very frustrating. And I found that there really was nothing that I could do about it.I found the worst bit that was that I was so weak that I couldn’t get hold of anything that wasn’t in immediate reach including the nurse calling bell.I couldn’t ask for something and even if something was even slightly out of my field of vision I couldn’t move me head enough to see whether it was there or not. I as with another person who has replied also had a professionally trained voice. six months on I can talk fine but any control over the powerful baritone has gone. Not that it matters that much as my musical interests lie in other directions at the moment.
Took my dad 2 months to get his voice back but it’s still raspy . Two months after the vent he also did a swallow test and then passed
I lost my voice when in ICU and on a ventilator, but it came back probably in days and certainly before I left ICU.
I went through most of these problems, but didn’t need a trachy, and got through it all mercifully quickly. The nasal feeder drove me nuts. I kept pulling it out and having to be X-rayed to check it was put back in the right place. Replacing it brought on panic attacks and I’m sure I hit one nurse particularly hard. My voice gradually returned, but a year on, I’m still conscious of some lasting damage.
If you have access to the BBC online, there is a program on Radio 4 called Word of Mouth where the poet Michael Rosen talks with his speech therapist about his voice recovery after serious Covid-19.
Hi 🙋♀️ I was off a ventilator for 3 weeks before I was given a swallowing test by SALT ( Speech And Language Therapy)! I’d been 4 weeks on ventilator/in a coma prior to this. Even then I had to push for it! Although I’d had a tracheotomy I’d previously been intubated orally. When they guide the initial metal tube , before replacing with a plastic tube, they have to navigate through the centre of your vocal chords. So the chords taking a bit of damaging😖 I am now 10 weeks off life support but my voice hasn’t still returned to it’s former self😳 my experience is that recovery from ICU is depressingly long.
I feel bad even asking about my voice to be honest. So many ICU/Covid patients have died (one of them a 28 year old ICU doctor from the actual ward I was on! Around the same time too). Apparently they’d given me a less that 5% survival so I’m trying to just accept that I’m lucky to be alive and not worry about my voice or the 4 teeth that they broke whilst attempting intubation. I went to my dentist a month ago and queried about what could be done about my broken teeth. He made me feel really shallow & ungrateful for even asking when I was only 6 weeks off ventilator. He advised me to go home, concentrate on my recovery, then maybe ask him again in 6 months. I’m 10 weeks off life support but there is very little change in my voice. I don’t want to appear vain! But I’ve always loved to sing 🎶
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