Yesterday I posted an update about my mum and her icu journey. I have a further update I would like to share.
From her ct the original infection is finally clearing up. She has a lot of fluid around her lungs and pneumonia at the bottom that the antibiotics are not clearing. They said the chance of survival is extremely low because she can’t breath without the ventilator. They gave me the choice to make of putting her on end of life care and letting her pass away or try a tracheotomy, it gives a very small chance of survival but a survival none the less. We are going ahead with the tracheotomy and she will have it fitted tomorrow. They will give her a week on it to see how she responds and take it from there.
Would like to hear anyone with a tracheotomy experience?
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Westbeginners1
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Trachy was the way to go for me - everyone had given up at week 6 of my coma - too ill too weak. ECMO had been refused because I would no longer survive the journey to Wythenshawe.. 2 weeks later I woke up. Trachy was annoying - but it meant nurses could suction lungs ( which is horrendous) BUT I am here and living a life. 💙
That is such a good story, gives me some hope. Very similar to my mum, coming into the 6th week. Told she is to ill, to weak. I couldn’t not give her the chance. She has a lot of mucus in her throat she was unable to clear herself, is suction to the lung clearing this? You should be so proud of how far you have came.
I am so sorry to hear about your mum. My wife was in ICU for 4 weeks, followed by4 weeks in the High dependency unit. Initially she was on the ventilator but kept trying to pull it out and then she started to chew the pipe. The surgeon suggested that she be put on a tracheotomy and we gave him the authority to do so. A very simple procedure which my wife adapted to quite quickly. Eventually, they implemented a voice box for periods of time so that she could speak ( very emotional times) after a period of time on the tracheotomy the time came to have it removed and again, this was a very special and emotional time for us and the staff, most of us had tears in our eyes when Marilyn spoke. What I am saying is, yes, have the tracheotomy inserted, especially if it gives you mum the chance of survival, no matter how small that chance is. The other thing is that they can easily suck out the fluids that may be causing mum discomfort, not a nice sight but very welcoming for your mum. We pray that she makes a full recovery. Pete & Marilyn x
Hi, thank you for your story, a hard time but a lovely ending. My mum has been on a ventilator for nearly 6 weeks which is why she is so weak without it. She couldn’t have the tracheotomy put in before because she had a deep neck infection. I am hoping that this will work. So it’s think it only gives a small chance, but it’s a chance and more than she has now. She has alot of mucus in her throat she was unable to clear herself so this sounds like they might be able to help with this.
Hello again, I hope you and your family are doing well under the circumstances, thank you for your reply and i am just wondering if there are any updates concerning your mum?
My mum got her tracheostomy fitted on Thursday and I am told she is doing well. I Spoke with the doctor yesterday. He said the main concern is she still has bits of infection in her neck (this is what started the hole thing and why she couldn’t get a tracheotomy until nearly 6 weeks in) she has been on the strongest antibiotics they can give her for the past 5 weeks and it is still not cleared and if she gets another big set back say another infection then she could become more unwell that she already is. In terms of the breathing she is on very low support along with a low dose of sedation so they plan to still wean her off that slowly and build her strength. She does need more support from the ventilator at night because she is so weak and tired. She is going for a ct in a week or 2 he said so will see infection etc then.
Hya, there seems to be a light at the end of the tunnel I think. The healing process is a long one and your mum sounds like she is a fighter. Believe me when I tell you that she can hear everything that is being said and discussed around her, so make sure that everything that she does hear is good. Continue to tell her how much you all love and need her and this will encourage her to fight those nasty infections, also tell her that other people are praying for her recovery.
My son had a tracheostomy and it was better for him because he struggled before this and his mouth had become sore and he started biting on the pipe. I was very concerned at first but the tracheostomy definitely helped. I was asked on three separate occasions about switching off my sons life support but I couldn't even think about that and refused. He has been out of hospital for just over 7 months now x
All I can say is there is nothing to fear from being on a trachy. My tracky went in just after Christmas ‘19 and came out at the end of February.. I wasn’t tolerating the air way. My family were called in twice because I wasn’t going to make it. I believe I had 4 drains in my lungs and was constantly getting infections. Different antibiotics were tried until the right one was found.
Once I came round I too was given a voice box for short periods of time. The scar from the tracky can take a while to heal and can be a bit smelly🤭
Hi, thank you so much for your story. My mum has had the ventilator in 5 weeks now, she was unable to get the tracky before due to a deep neck infection she had, like you she had many drains and surgery to wash it out. The ventilation has made her lungs (and all of her!) very weak but I hope she can build up strength on the tracky. If you don’t mind me asking how did you cope breathing when the tracky was removed? And once you were up how long with your recovery?
It is also lovely to speak with someone similar age to my mum - she is 72, it sounds like you have a very similar story too.
Don’t forget we are all different. But as I understand it all the tracky does is help you breath. During your stay in icu you lose a tremendous amount of weight this just not fat but muscle as well.
Whilst I was still in the coma the tracky cuff was deflated for short periods of time to encourage me to breath on my own. Once removed I was breathing for myself but I did have to learn how to swallow and speak as well as walk again etc. whilst in hospital you should get support from the physios and the SaLT team. Depending where you live will determine what aftercare she will get. Generally the follow up physio is for a relatively short time.
In my case when I was discharged it was into the start of covid and I had no support at all. Fortunately I found ICUSteps Chester which is now Critical Care Support Network which gave me both physical and peer support via zoom. Incidentally they also provide a drop in for relatives on a Tuesday evening at 8.
My husband was in a similar situation, had the tracheotomy, and it was the beginning of his recovery - long and slow, several setbacks, but he made it through.
I was in ICU 32 days 10 in an induced Coma. I was put on an Oscillator which meant a Trachy as well as the two chest drains, I had before Oscillator. The Wife was told that this gave me a 50/50 chance of survival. my whole time I was in ICU the Wife was told twice that they did not see me surviving the night! I was on some PAP? machine attached to my Trachy of some sort for some time after to help me breath I am still here. I had a layer of pus on the outside of my lungs and fluid inside which took years to go and I still have times of fluid popping up.
Not able to speak was a strange one but as soon as it was out it skins over so quickly and you can once more talk the hind legs off a donkey abet a bit chrocky?
I had an emergency one. I was so ill at the time I don’t remember much about it. It sounds like your mum may well be in this position. Obviously the whole story would need to be known to someone who really understand what is going on. But honestly from someone who would have died without one I can honestly say that it really was no big deal. Of all of the horrible things that happened to me this was by no means the worst.
Thanks for your comment, all of these positive stories give me hope and that i made the best decision for her. She has been through a lot the past 6 weeks and i am hoping now she has this it will help her recover.
A tracheotomy is probably what saved my life. I was in a ventilator with bacterial, viral and then fungal pneumonia. I had very little chance of survival. After the trach, I recovered quickly. I was told it is a miracle I survived.
I was awake 1-2 weeks after the trach. I only have a small scar to show for the trach - no longterm effects. After struggling to breathe when sick (the last I can remember was a week or two before going to the ER), the trach seemed like a relief, once I was awake enough. It seems odd to breath out of your throat, but it was not difficult to get used to. By contrast, my intubation did not go well, as gag reflex fights against it. There is no similar impact with a trach - just clear passage way to breathe.
I’ve posted on here as my Dad is currently in week 10 on his ICU journey; so whilst we are no way near the end of our journey I can understand the desperation you are going through. For us, my Dad (fit and healthy 65) was in an induced coma with severe damage to his heart and the main issue they had with offering him any treatment for so long (we were called into rooms on 3 separate occasions over a 4 week period to say he has hours to live) mainly due to the fluid build up on his lungs as a result of the heart failing to clear fluid from his lungs.
He had pulmonary adema (fluid on lungs) and effusion (fluid around the lungs) and we were essentially told his lungs were full of fluid and were sat like wet sponges in pools of water. He was on 95% O2 support with the ventilator maxed out for 3 weeks and prior was on CPAP for 3 weeks and was on support for every organ failure.
We were told about his chest muscles detoriating and ICU global myopathy would make the transition to trachi very difficult whilst weaning so I know where you are at, we were there 4 weeks ago- but like you we said if there’s even a 1% chance he survives that’s better than end of life, especially as no evidence of damage to his brain.
He’s had the trachi in now for over 3 weeks, it took him 6 days to open his eyes after the sedation was off and ventilator removed (I posted on here at this point out of total fear he would never wake up) and the wise forum members reassured us it takes time, so prepare for that, it really does and as family we want it to be quick but really the body is amazing and works to its own time. So make sure your Mum is afforded as much time as possible to wake up, and adapt to trachi. Dad was on full ventilator settings on the trachi and they couldn’t move him to the V60 (a less heavy ventilator machine) for about 10 days after trachi insert.
It took about a week for Dad to close his mouth, as his mouth was used to the tube (also be prepared for that- it looks quite scary and I wasn’t prepared for that).
We then have had a really slow weaning process as his weakness to his muscles was very real and he also had delirium and total confusion as to where he was. The suction they do with the trachi is similar to what you might have seen them do sometimes on the ventilator, it’s from the little tube that usually comes out of the ventilator/trachi pipe, it essentially goes down and hoovers up the secretions and helps clear the mucus from the bottom of the lungs, for a few days they had to do this at least a couple of times an hour as he had multiple chest infections, pneumonia and a collapsed base of his lungs. It’s not nice to watch, and as many who have personally experienced have attested, it’s horrible as it forces a cough and feels very uncomfortable (for us viewing- there is no sound coming out from the cough so it looks like choking- but don’t worry, it’s normal and helps a lot). We had like a full bucket of suction next to dad and could see how much mucus was coming out.
The trachi is a weaning process and it’s slow, we’ve been on trachi for a month (I’ve posted several times in forums seeking adevice annd responses are unbelievable and give us hope). We are hoping Dads trachi will come out on Monday. Stay positive and hold onto any chance, reading some of the forum members stories really helped me, throw everything at this fight as your Mum will be and make sure your Mum is afforded every opportunity and the time to heal. I know we are still not in the clear but where we are now didn’t look at all possible 4 weeks ago.
Im preparing lunch for my Dad now and he’s talking to me about plans for Christmas and yesterday he walked and stood up, have faith.
Hi, thank you for your story, it sounds very similar to my experience with my mum. She is 72 and now going into week 6 in ICU and ventilated, hers all started with a neck infection that spread down into her lungs. That has now cleared but she has a lot of fluid around her lungs and pneumonia at the bottom.
Before the tracky my mum had the ventilator in her mouth, this was removed last Sunday and she managed nearly 48 hours breathing herself before she was struggling enough that it was put back in. If the neck infection had not cleared she would not have been able to have the tracky so a bit of a miracle in itself.
She got it put in Thursday and was awake Thursday night, although very sleepy and dazed. Yesterday they had turned her sedation off but she was asleep my full visit. Today another family member was in to visit and she was awake and alert and trying to communicate - which can only be a good thing. The day she had it put in the ventilator was at 25% oxygen but has since been put up to 30% - I am not sure if this is alot or not.
I noticed what you mean about the mouth still open and the secretion that the help clear. She has had to have this done a few times but again i hope this is a good thing.
It seems like she is making small improvements with waking up etc i just hope the doctors give her enough time to adapt and time to gain her strength back up.
I hope your dad is improving, however slow it is. It is nice to speak with someone in a very similar position so please feel free to contact me anytime to chat - going through the same thing might to easier to chat to someone.
Yes it’s so slow, sounds really positive that she was awake same day as trachi, Dad took 5 days to wake up, and if I’m honest looking back he was barely awake, and now he has no recollection of ‘waking up’ I remember he would just follow us with his eyes and kinda roll them if we said something or ‘blink if you can hear us Dad’ and he would do, which to us was huge but he doesn’t have any memory of this, nor any of the visitors (family only) that came to see him during his first few days of being ‘awake’.
I am also obsessed with looking at all the stats and would fixate on the oxygen saturation and % oxygen that Dad was on, as his lungs were always the biggest issue (caused by fluid build up from heart failure) but don’t worry too much about the %, for reference the air that you and I are breathing now is 21%, so at 30% fio rate that’s only 9% extra oxygen, which is low (my Dad spent a few days at 95%) so it just means that she is being weaned off support and they check the blood gasses every hour or so to make sure they aren’t weaning too quickly or they increase the % when they are doing another stage of the weaning. The important number is the pO2 in blood gas, think in ICU they want it above 10. Also for more reassurance they are thinking of removing my Dads trachi on Monday and he’s still on 25% O2 on his trachi mask (which is like a mask that covers the trachi insertion as the last stage of weaning).
Your mum sounds like she is really doing great and agree absolutely in her improvements from your original post, the Drs will give her the time and resources, the nurses will have a plan for their shift, I usually ask what that plan is as it’s set by the Drs on ward round, it’s usually involved around monitoring x y and z and aiming to wean off support (meds/ventilation).
It’s such a long road, like I said we’re very much in it, and on my first few posts on here I never thought that I would ever be the one replying to a post, but I promise I (along with all the amazing members in here) am right on that journey with you.
Oh also, I started writing a diary, everyone kept telling me to but I was always too scared to incase Dad didn’t make it, but it’s really helped my Dad (who doesn’t really express lots of emotions) to fill in the blanks, especially on the rehab phase, like ‘Dad look last week you were on 40% full ventilator, this week your on v60 machine and breathing for 6 hours by yourself) like the weekly updates and reflections are big but day to day for Dad it’s boring and slow.
Hello, thank you for thinking of us and commenting. Mum had the tracheostomy fitted on Thursday and to my surprise was awake Thursday night! i say awake .. her eyes were open but she was very dazed and not communicating or focusing on me or anything. I saw her yesterday and she was sleeping the full visit. The nurse said they had stopped the sedation so she would wake up but hadn't at that point. They put a mitt on her hand to stop her touching the tubes. She opened her eyes a few times whilst i was there and looked at me but that was about it. On Thursday when she had it fitted the o2 % was at 25% and yesterday was 30% - not sure if that is alot of support or not.
My uncle visited her today and she was awake and alert, trying to communicate and waved bye to him. When I called to check on her the nurse said she had been moved about the bed alot this morning so was tired now and asleep. They didn't say much about what the plan was next, I will find out more tomorrow when i visit.
I found it very strange that I couldn't talk when I came round. I had no idea that I had undergone a tracheostomy, which added to the confusion, the meds were still strong and playing a lot of tricks on me, I also had no concept of time including day and night.Apart from that I wear my tracheostomy scar with pride, because no doubt without it I wouldn't be here to tell the tale. The suction process is a strange one, I described it has the worst and best feeling in the world in seconds. When they first put the pipe in it feels like it is turning you inside out from your toes, but then almost immediately that goes along with the drowning feeling that the fluid is causing, the relief at that point goes to 11.
I've had a bad chest for years prior to this emergency admission, I've no idea what they did in ICU, but since 2010 I haven't had a wheeze.
I hope your mum starts to improve, just remember that she will still be confused with the meds, and might not make a lot of sense at times.
Hiya Westbeginners1 - I hope you are OK this evening and Mum is good.
My husband (aged 70) was in ITU for 120 days from February this year and spent about 115 of these on a ventilator with an extended period of weaning off the ventilator due to various issues.
Initially when intubated he had the tube down his throat and therefore was sedated to prevent him pulling it out (they used Propofol). As it was obvious he would need to be ventilated for an extended period, it was standard for patients requiring ventilation over 7 days to always have a tracheostomy at the hospital he was in to prevent irritation of the throat and trachea and to allow patients to be weaned off the sedation.
Initially when I was told I was horrified as it seemed so brutal, however, for the patient they are (generally) more comfortable and do not require sedation and this was indeed the case for my husband. It was fitted on the 7th day and then he was weaned off the sedation and although he didn't initially wake up for quite a while, I was told he could hear me and he often reacted to my voice by moving a finger, etc.
As his recovery progressed the tracheostomy was advantageous as a speaking valve was attached to the tracheostomy for short but increasing time periods and he put on "optiflow" where he initiated the breath and the ventilator puffed air into his lungs, and eventually he was strong enough to make sounds through the speaking valve and eventually talk for short periods which again increased his strength. As he had a tracheostomy when he got tired and always overnight he was put back on the ventilator breathing properly for him and all by adding/removing tubes to the tracheostomy.
This is a roller coaster of a journey for you and your Mum. Try to remember that recovery is not linear and will be up and down with good and bad days but I truly hope the good ones outweigh the not so good and your Mum continues in her recovery.
Hiya having a Trachy I feel personally it changed my life. I got covid back in late 2021 and developed pneumonia which was so bad I had to be placed in a induced coma for nearly two months.
My recovery was up & down as my oxygen levels kept dropping at times I was on 100% oxygen so I wasn’t breathing at all for myself I then suffered sepsis, multiple organ failure, and a blood clot in my jugular vein I was put on kidney dialysis & was not producing any urine . I was truly on my way out & my family was told I was critical but stable .
Despite all of my issues my breathing started to improve and was less dependent on life support, when I was only requiring a small amount of oxygen the medical staff advised my family that they wanted to give me a Tracheotomy ever since that day I just went from strength to strength ⭐️⭐️
I have been through so much since recovering enough to go home but it’s been a journey ever since with one problem solved then another one presenting it self 😩but despite all of this Iam determined to slowly get my life back.
My encouragement to you would be to never give up fighting for your mother, believe in the power of prayer & remember she’s not as fragile as she seems 😘
You can follow my personal journey on my ⭐️Facebook page ⭐️. What doesn’t kill you makes you stronger⭐️ ourinvisibleworldwellbeing@gmail.com
Hello, please, please, please go for the Tracheotomy option, whilst there is a fraction of a percent of survival, you should take it. I really do want your good lady to pull through this and I have a feeling that she will. My beautiful wife had a very similar issue a year ago and she fought like a tiger, she didn’t like the tracheotomy but she knew it had to be done. Tell her that everyone is on her side and praying for her success. Love from the Haywood family. Xx
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