I posted a couple of weeks ago about my Dad taking a while to wake up from his sedation, he has been hospitalised now for almost 8 weeks, he was in an induced coma for 3 weeks, after suffering severe heart damage following a cardiac arrest and two further heart attacks on route to the hospital. He has now thankfully woken up, and suffered a little delirium which (for now) seems to have eased. We are 2 weeks on the trachi weaning process, he has the cuff down now continuously, and they are doing the trails of unsupported breathing for around 3 hours a day, which has been ok for the last couple of days.
He is very weak globally, he has ICU aquired muscle weakness, he’s able to do small movements (lift his arms to 90 degree angle) lift his legs a little and move his head but says he feels like his limbs weigh a tonne.
He’s had abit of a set back with a chest infection that has shown some resistance to anti-biotics but he is desperate for a drink, yesterday he was able to try with some yoghurt and they originally approved it, in very small amounts, but today have told us they want him NBM again as his muscles aren’t strong enough to swallow.
Does anyone else have any similar experience with this? It’s so hard seeing him so desperate to drink and unable to do anything about it. Any advice is as ever so appreciated.
Thank you x
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JBean123
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Yes they have done those a little to provide some moisture to his mouth, it’s more the muscles that he needs to swallow are so weak, I know he’ll get there it’s just sometimes the hard days are harder to handle.
You could ask if he could have ice chips (very small pieces of ice). Being thirsty can be very upsetting and a small mouthful of ice chips can soothe the sensation of thirst. The problem with muscle loss and weakness is that it effects the whole body so the muscles involved in swallowing and the diaphragm, located below the lungs, the major muscle in breathing can be involved. As he gets gradually stronger so will his swallowing and breathing.
Thanks Rhyl1 yes the global weakness has been mentioned to us as he is now over 8 weeks in ICU care which has obviously caused huge muscle atrophy. Especially when 3 of them were asleep so he has to relearn everything which is frustrating for him. The ice chips sound like a great idea and I have this as my request for the day when I head in for visiting. Thank you for sharing your experience and for your valuable advice, wishing you good health. X
The problem is a bit catch 22 - you need to get stronger for everything else to improve - being able to eat & drink speeds this up but then you don’t have the strength to do so!!
Tell him to not lose heart and remind him how far he has come not how far he has to go
Sepsur this echoes exactly what we were told yesterday; the nurse was saying that swallowing strength is so important as ‘’the more you do, the better you feel. The better you feel the more you do’’
Yes I will absolutely remind him how far he has come and the doctors and nurses certainly do this a lot as his recovery has been incredible, he’s loosing patience and wants to do more than his body is allowing at the moment. Rest is also important for him so it’s that balance that he is yet to find at the moment.
Thank you as ever for your response and for being another huge inspiration for so many of us, I read your profile and you are made of stronger stuff than most, wishing you good health.
as Rhyl1 says. I was given ice chips and had 3 exercises to do with them. I was restricted to how many and how often and I can’t quite remember what the exercises were. I had to let them melt in my mouth whilst doing the exercises before swallowing. I lost the use of all the muscles in my body and any food was out of the question. Once the tracky was removed I remained on the ice chips until I left but eventually I was allowed to take them myself.
As to the sponges Sepsur mentioned it was a very much a love hate relationship, they were never wet enough and you couldn’t eat them - was desperate.
My ng tube was removed on the last day and that is when I started to eat “slop” no other way to describe it.
Now 3 ½ years later my swallow is much improved BUT there are certain foods i can’t risk eating e.g. brownies, lettuce (baby leaves) brown rice (white is ok) and I always have a drink near me when eating.
Also my voice has recovered and sounds normal.
You mentioned his hallucinations; in my case they were personal to me and you may find that he will get very frustrated with you (if not angry) if you don’t understand what he is saying or when he is able to write what he is writing.
Thanks FamilyHistorian for as ever your detailed and thoughtful response.
The ice chips sound like a great idea- I mentioned in another reply his AC in his room is broken and they have been putting ice in gloves to cool him down as the room is very stuff- but they haven’t given him any in his mouth, he’s saying he is ‘gasping for a drink’ and the sponge they have been doing ok the end of the suction which he is now strong enough to say is totally pointless to him.
I’ll definitely ask today for the ice chips as this will also cool him down so I’m thinking double benefit
It sounds like you are doing unbelievable after reading your story and ICU journey, what unbelievable inner strength you have and still helping and advising so many of us on here, thank you so very much for tour response and contributions. I’ve found lots of solace in this website and the forums and reading stories like yours gives us relative hope.
I belong to a support group Critical Care Support Network cc-sn.org/ amongst other things they run a support group on zoom for relatives every Tuesday at 2000. If you email amanda.teamadmin@cc-sn.org she will give you the details of the log in.
Managing a patients temperature is quite difficult. I was in icu during the winter and I’m told they had to put a number of fans in the room.
With regard to the ice chips perhaps you could speak to a member of SaLT - speech & language
I also saw this with my brother in ICU. He had to relearn how to swallow, how to speak. He was allowed a couple of mls of water, less than a spoonful which is 5ml as he progressed. I remember they gave him an ice lolly and he really enjoyed that. Please be assured it will come back for yourDad and making a note of these little progress steps forward really does help as when you look back you can hold on to these positives on days when he has set backs like new infections as I saw in my brother. Stay strong and your presence will be a great comfort for your Dad. Best wishes for his recovery
Copse77 thank you for your response, and for your understanding with a relative who has been through ICU journey, I hope your brother is now in good health.
The ice lollies are a great idea- i will ask them today if this is possible for Dad. He’s not been offered ice just a couple of spoonfuls or water and he struggled with the plastic spoon as there was yes probably 5mls on there, will continue to encourage him to practice.
Regaining strength starts slowly. We have to have enough muscle strength just to exercise those muscles on a consistent basis, including the throat. Also, everyone is different - I could barely raise my arms at first, and couldn't raise my legs.
I was given my first swallow test later than I wanted, but did well enough to continue learning to swallow again. But it was a baby step each day and took a while before I was able to eat normally, but even by then I still didn't have the strength to pick up a spoon at first.
Life starts over for us. It isn't easy, but he will improve. Patience is key.
Thank you Lux95 for tour response, Dads the same with barely able to raise his arms, they have said global weakness and aren’t surprised his swallowing muscles are also weak. You are totally right that patience is key, we I guess have had longer to come to terms with the levels of patience required, he’s now woken up fully, and thankfully through his delirium and hasn’t quite realised what his body has been through whilst he slept for those 3 weeks.
Will read him some of the responses on here and remind him of the process and more importantly the progress he has made from this time last week. Thank you, your advice and experience really do mean the world to all us relatives on here.
I was the same for about three weeks after coming off trachi, you can't rush it, the swallow response has to be good otherwise food will enter the lungs. All I wanted for weeks was to come off gastric feeding and have a drink of water, every time I failed swallow testing I cried like a child, the overwhelming desire for water was all incumpasing, but eventually I passed, that first glass of water was from God!Things take time he will get there.
God's grace, Paul at the Steampacket Inn Knottingley......
Thank you Misterpaulwood for your reply, and for sharing your experiences, yes Dad is certainly frustrated with the swallowing as the thirst has been agonising to watch him suffer and his room ks very hot as the said the AC isn’t working properly so he’s getting annoyed very quickly. We are all learning levels of patients required for ICU recovery, Dad has been asleep for 3 weeks in an induced coma and hospitalised for 5 weeks prior so he has a long road ahead to which we will keep faith in his recovery and be with him every step.
I have been there, done that, and I really feel for your Dad.
It was a Speech and Language therapist who tested, and failed, my swallowing twice. The problem was muscle weakness, plus damage to my throat from having had tubes down it.
After the first test I was put on a diet of pureed food and thickened drinks. Both were disgusting. After the second fail I refused point blank to eat/drink any more of it and insisted on normal food and drink. I had to discuss this with a doctor and agree that it was risky. As an adult with full mental capacity this is your right, at least in the UK. I may have had to sign a form, I can't remember. I never once regretted it. It's not necessarily right for everyone to do that, and there are nicer forms of soft food than I was getting - different hospitals do things differently. My first unthickened water was bliss!
I recently spoke to a speech and language therapist, who is doing research on how to improve treatment of patients with swallowing problems. She says S & L therapists can give treatment to help, for muscle weakness, damage, and sensory changes. If this hasn't been offered, you may need to get pushy and ask for it. I was never given any help, just tested and failed.
She also said that giving thickened drinks has been discredited and is no longer regarded as best practice, because thickened drinks are so unpleasant that they put patients at risk of dehydration. I have seen fellow-patients ("room-mates") drink straight from their water jug rather than take thickened drinks. They didn't choke.
At first it was an effort to swallow, I really had to think about it and tell myself when to do it ("chew chew chew 3-2-1-swallow!"), but it got easier quite quickly, once I'd had a bit of practice, and enough good food to rebuild some muscles. It was normal enough for me to stop having to think about it after a couple of months and is now (2 and a half years later) totally normal.
The medics seem to be very risk averse - they consider the risks of doing something to move the patient forward, but do not try to balance the risks of leaving them as they are. And, IMHO, any assessment should be accompanied by help, otherwise it can do more harm than good. And that applies across the board, not just to swallowing.
I wish your Dad all the best. He is lucky to have you to advocate for him.
Kit10 Thank you so much for this detailed response. I told my Dad today your words of ‘3,2,1 swallow’ and he passed his SALT test today for soup/yoghurts and all liquids.
We’ve been home and whipped up a soup with all vegetables from the garden so hope that provides some good nutrition for him.
You sound like a total fighter, unbelievable what you have been through and thank you for your advice. We’ve been doing some extra physio with Dad and they have cautiously told us to not push Dad but he’s saying he wants more physio so he can get out of there soon. It’s all a balance, just praying he keeps getting stronger.
He’s now got the VRE infection that we were told today which is another set back, Sepsur im sorry to ask you directly but I think that you had some experience with VRE, I saw on another post. I’m not sure if you can offer any advice on this? I’m naturally now terrified and doing research on everything that can help with this. He seems ok and his infection markers are coming down (apparently he’s had it for 10 days, but they have juat told us today- it’s just so difficult with one step forward and then 5 steps back it feels.
Well done Dad! If what I wrote has helped anyone, I'm happy to help.
I'd agree that the sooner he gets physio the better, but don't exhaust him. Little and often and rest before he gets tired is perhaps the best way to do exercises. Get everything moving in all possible directions as soon as possible so it doesn't seize up, strength and endurance will come with time.
Nutritious soup sounds great! Get as much protein in it as you can too to rebuild muscles. Home made from fresh ingredients has got to be better than hospital food. If he's been on antibiotics I'd also suggest probiotic yoghurt, because having good gut bacteria seems to be important for many aspects of health and particularly for guarding against the dreaded C. dif.
Kit10 Another amazing advice, will get the probiotic yoghurts tomorrow for him! He has had an LVAD fitted so think he remains on antibiotics for life now so will absolutely get that good bacteria in there.
We had a really good meeting with the Dr today who said ‘frankly it’s nothing short of a miracle he’s survived this’. He’s got ICU aquired global myopathy after over 8 weekend in CTCU but they said that’s the only part of his journey they aren’t surprised by.
He’s had a broccoli and watercress soup today with all organic ingredients (then ditched it for a Heinz Tomato soup 🫢). But pro biotic yoghurt tomorrow will be on the list- might even add this into to a fruit smoothie. He’s generally very fit and healthy (one of the reasons they are saying he has survived his ordeal) so good nutrition he has known his whole life.
Yes the SALT team actually said stop practicing swallowing 30 mins at least before you eat because they don’t want his swallowing muscles tired. He said today it’s just crazy learning things that we all do without even thinking.
Hopefully he continues with the trachi weaning well, and he’s very keen to get more physio- he’s got a tennis ball that he keeps trying to throw as he is big sports player so hoping we can get his brain to activate some muscle memory, but obviously within reason.
Thanks again for another great piece of advice, the 1,2,3 SWALLOW totally stuck with him.
I too was in an induced coma for more than three weeks after being struck with Covid 19 in 2020. I was also delirious, weak, couldn’t walk, etc. The hardest thing for me was that while being in that coma my only son passed due to COVID.
Anyway, after waking up I too had a tracheotomy. I was being tube fed, I had extra oxygen, was hungry and thirsty but I was unable to eat or drink. They started by little by cutting the tube from the tracheotomy.
They took me to a swallowing test. After the images they found that when I swallowed thin consistency it gave me silent aspiration, which could have killed me. They scheduled me for another test in a month. In the meantime they fed me bland food mixed with instant food thickener. I went home with a hole in my throat and a diet that was very hard to follow. Everything liquid needed to be hardened. I was also given ice chips.
On my next swallow test they told me that I was cleared to eat my food, no more hardening. Perhaps this is what’s going on with your father. Let’s hope for the best and pray. He will be fine, it’ll take some time but he will come around. I was 70 years old when I got sick.
Del20 oh my goodness, I am so sorry to hear of your experience and my deepest condolences for the tragic loss of your son.
They mentioned about aspiration as the biggest concerns, he has now been cleared for ‘mush foods’ and all liquids - he still said he has to think about swallowing, and I was mentioning to a previous post that he’s been doing ‘3-2-1 Swallow’ as a practice. I’m happy to be taking him in some fresh foods as he isn’t too keen on the hospital options which sounded vile. He typically has a very good diet and we grow a lot of our own veg so we are trying to use that to get some nutrition in.
I asked him about the ice chips and he wasn’t keen on grinding ice, but luckily now his thirst has subsided and he’s been enjoying some smoothies and a hot chocolate.
I cant imagine the inner strength that you must have needed to pull through an ICU recovery whilst suffering such a personal bereavement. Thank you for sharing and for providing reassurance to my family and I and so many who have found themselves researching ‘ICU rehabilitation’ at all hours on behalf of our loved ones who are currently going through some of what you experienced.
Oh god, I can really relate to your dad. I was constantly mithering for a drink but couldn't have one because my swallow had gone and I had literally no swallow response. I even convinced a nurse I had a bag full of flavoured water I needed a drink and I had a very convincing deluison that I had these drinks 😂😂 9 months on and now I'm on a normal fluid and easy to chew Diet as advised by SALT. It will come back more so after trach is removed x
My husband (aged 70) was 120 days in ITU (the vast majority asleep / coma) with about 118 on a ventilator (via a tracheostomy).
He was finally decannulated on mid June 2023 (Goodness I have realised this is only 2.5 months ago!) having had an extended ventilator weaning process.
He also experienced ICU muscle weakness / atrophy from lack of movement and was unable to speak, swallow or move his legs or arms in any meaningful fashion and initially was not allowed to drink or eat and was fed initially via TPN then via an NJ tube.
With help from the SLT team following decannulation, he began with the sponges, then swallowing firstly a few teaspoons of thickened liquid and eating teaspoons of puree and his speech improved as his tongue exercises made his tongue stronger and he was able to form words and as his swallow got stronger he progressed to thin fluid and soft food.
Movement in his body was zero as he didn't have any muscle left and also because he was so swollen with ascites but thanks to the Physio teams he started firstly passive movements, then sitting on the edge of the bed, standing via a Sara Steady, etc. and finally walking a step or two with frames.
He was discharged from ITU on end June 2023 and from the hospital to home mid July 2023 and now eats, drinks and speaks normally although he is very weak and needs to rest a lot. His mood can also be low.
It is tough to watch and I will admit it is also tough sometimes dealing with the mood swings now he is home but it is amazing how a body can recover.
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