Hi, it’s Patrik Hutzel from INTENSIVECAREHOTLINE.COM where we instantly improve the lives for Families of critically ill Patients in Intensive Care, so that you can make informed decisions, have PEACE OF MIND, real power, real control and so that you can influence decision making fast, even if you’re not a doctor or a nurse in Intensive Care!
This is another episode of “YOUR QUESTIONS ANSWERED“ and in last week’s episode I answered another question from our readers and the question was
You can check out last week’s question by clicking on the link here.
In this episode of “YOUR QUESTIONS ANSWERED” I want to answer a question from one of my clients Anna as part of my 1:1 consulting and advocacy service! Anna is bothered if her dad’s speech and swallowing problems are stroke-related and she is asking if she should request for her dad’s review of medical records to know the cause.
My Dad is Already Out of ICU But Still with Swallowing and Speech Problem. Should I Request for a Review of His Medical Records to Know the Cause?
Please see comments in red below.
Happy to do an interview if you can arrange it.
Thanks so much for your email! Very kind of you to ask.
I’ve been meaning to purchase another email session – there’s so much to update you on and I really need your advice and expertise on some issues!
Very quickly, on the plus side Dad is still off all oxygen! He is breathing fine. All the anxiety is gone – which just proves his anxiety was founded – as he was genuinely finding it difficult to breathe before getting the right treatment! I feel it makes it all the more remarkable he actually weaned from the ventilator in ICU, as he wasn’t getting any steroid treatment as they hadn’t called in the respiratory consultant for a second opinion!
Patrik: I presume he is still on the steroids for inflammation like you previously mentioned. I remember as soon as he was commenced on the steroids his oxygen levels came down and he felt at ease with is breathing which still seems the case! I am finding across the board in the UK in ICU that specialist consultations are the exception and not the rule. Much to the detriment of Patients in ICU.
He is looking well. He is in a single room on the respiratory ward – he’s very happy as it’s quieter and gives him private space to have visitors. He is sleeping better.
Patrik: Privacy is very important and so is a good night’s sleep, especially after what your Dad has been through! Are they showering him? A shower I believe works wonders.
He has a lovely physio Rey who is wonderful; so can-do and motivated. He loves Dad’s PMA and his resilience. Dad managed to walk along the corridor with the walking frame! He wants Dad to start going off the ward in a wheelchair for a change of scenery with us, playing scrabble, doing Sudoku – that kind of thing.
Patrik: You and your family have shown your Dad the “can-do” attitude by not giving up and by fighting for what he needs! The more staff he has around him with the same mental attitude the better! Just like Christian described in his interview that he had a fantastic Physio team around him, the same is important for your Dad! One thing standing out for me in all of this is simply how far he has come. I was surprised that in the fluoroscopy reports nobody mentioned that he survived seven cardiac arrests! Get your Dad out and about if you can. Get him some fresh air, some natural daylight. If you can play scrabble etc… that is mind stimulating.
A pic of the goal board here:
Patrik: I like the goal board and I agree he needs the oral care regularly. A better long-term goal would be to have the eating part as part of the goal. A long-term goal would also be to “go home” so he can keep the end goal in mind.
Dad is now reading his kindle – he actually read an entire book and enjoyed it. He openly admits his concentration level isn’t back to where it was, but I know you explained to me it’s very much part of the recovery after critical illness. It’s funny, Dad used to love television – but actually says he’s really not bothered about watching it much at the moment. You’re right that after critical illness, some things do change a little – and I guess that’s natural?
Patrik: Many Patients take a long time to recover mentally and physically after critical illness. Imagine being in an induced coma for a couple of months, having truckloads of addictive sedatives and opiates for the induced coma as well as other multiple drugs infused, it does come with side effects such as prolonged recovery.
Patrik: If your Dad read an entire book, that’s really massive progress I think. That takes a lot of attention and concentration!
What he loves is company and visitors – that hasn’t changed. He’s always been very sociable and loves to chat. His cognitive recovery is truly remarkable.
Patrik: That is positive and therefore I think it’s unlikely he had a stroke. They can check in the MRI and rule it out hopefully.
Some challenges remain, as do some concerns on our part about care. Dad really wants to move forward with his voice and swallow.
He had a second video fluoroscopy, report attached below. SALT feel they need neurology to lead on it now.
Patrik: Please see comments below.
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Dad is booked for a head MRI but his Pacemaker requires a cardiologist to be present, so consequently there are only two lists per month. I await the date.
Patrik: Yes I understand that with his PPM he is unable to have an MRI without the specialist being present.
It sounds as though they are now considering whether his dysphagia is related to the possible TIA before his admission to hospital or a possible stroke in ICU. As you know Patrik this is what we were asking all along in ICU! Can they do a head MRI? What about his swallow now you are proposing to discharge him, what about his neurology. Just two weeks ago I said, could his swallow issues be related to a possible stroke? Every time they have shut it down. Now suddenly they are thinking it’s stroke related? What’s happening?
Patrik: I guess it would be difficult for them to determine if the swallowing issue is stroke or tracheostomy related. Especially since you mentioned that his neurology has improved and since you mentioned that he is mentally so much stronger, I would imagine a stroke is unlikely. Again a neurologist should be giving some input to seek clarity. If there is one thing ICU was correct all the way along is that recovery after such prolonged critical illness can take time and is unpredictable. Also, with seven cardiac arrests ‘under his belt’ I would expect some neurological deficit but not a stroke. Again the MRI should get clarity on the stroke issue.
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I can’t really get to the bottom of how and when SALT assessed him. I honestly don’t know if they did before he left ICU. I asked on the respiratory ward but they said ICU keep their own notes, separately?
Patrik: Usually all medical records should be combined. In case you haven’t got access to it, you emailed me the fluoroscopy report and I have attached them.
We have come to the conclusion it would be useful to request all of his medical notes from the beginning – Dad agreed and signed the form. Do you offer a service for reviewing notes Patrik? I think we need to track this back as it’s been over a month now since Dad left ICU and we’re still no further forward with his swallow. He is still nil by mouth.
Patrik: Yes we do offer to review medical records. In fact many of our clients request this service. We can certainly do that and go in as much detail as possible. Given that both fluoroscopies are almost identical in their findings “Moderate to severe aspiration pre-on and post swallow with custard. Mostly aspiration is silent with a delayed cough. Refer fluoroscopy results to Nutrition support team” I am not surprised that he is still “Nil by mouth”. The risk for an aspiration Pneumonia is too high and therefore the risk for ICU readmission is way too high!
There have been problems with his feeding tube – his PH levels were off but x rays were appearing to show it in the right place. It turns out the feeding tube was too low – it was delivering the feed in the wrong part – ileum possibly?? So they told us it was causing Dad’s body to evacuate the feed too quickly (as you know Dad has suffered with extremely loose stools since admission to ICU.) They think this is what has been causing his constant diarrhea.
Patrik: That’s scary stuff. If the NG tube was sitting too low it would have delivered feeds in the duodenum or jejunum instead of his stomach causing loose stools and also causing an acidic PH. The acidic PH is also a risk for causing a stomach ulcer or even stomach bleed. Totally unnecessary and avoidable. How long did it take them to work that out? Something we could find out when reviewing medical records.
Apparently they admitted to my step mom they are amazed Dad has been recovering so well physically given the compromised feed situation! I didn’t realize that Dad was losing weight at intervals and they didn’t know why, so we’re putting him on the highest calorie feeds.
Patrik: I think your Dad has been recovering in spite of all of the issues and obstacles not because of the treatment and therapy. I think his positive mental attitude needs to be mentioned again. It’s something you pointed out from the start and it looks like he keeps going because of it. One proverb that comes to mind is “if you’re going through hell, keep going”! Your Dad certainly keeps going and despite all of the obstacles he keeps slowly improving! Another sign in my mind why he doesn’t have a stroke.
Does all this sound normal/acceptable to you Patrik? As non-medics we have no idea. We don’t want to complain if this is an accepted complication, but on the other hand his bowel incontinence has been very, very distressing for Dad. It’s something that has really worried him. They have always told us that as Dad can say when it’s about to happen so they think the nerve connection is there and it’s the liquid feed that’s the problem.
Patrik: Having the feeding tube sitting too low is unacceptable. First, they should have x-rayed it on insertion and then daily position checks of the nursing staff should be part of their standard routine. A simple check by either aspirating food and checking PH or by inserting air into the stomach and do a bubble check with a stethoscope could have avoided this issue in the first place. The ward nurses should be trained on checking a nasogastric feed tube. It’s basic nursing care. In most instances the liquid feeds don’t cause diarrhea or loose stools and if it does, a dietician needs to review and change it. Many Patients with chronic diseases live with PEG or NG feeds and don’t have diarrhea. Keep in mind though, the many antibiotics your Dad would have had in ICU would have caused some diarrhea at some point. In all of this, is a dietician or a gastroenterologist involved? Speech therapy suggested in their fluoroscopy reports to refer to nutrition supports team. Has this happened? If so, what are their recommendations?
They have put a new tube in now but Dad is going to have a PEG feed procedure on 17 September, as they anticipate his swallow therapy will be a long process, plus he can’t leave hospital to go to the residential rehab unit with an NG tube?
Patrik: Personally I am anti-PEG tube for a number of reasons. It would be a more permanent tube, but I also understand that going to rehabilitation with an NG tube has the risk that if it comes out, they can’t replace it there, because they won’t have the skills. Because your Dad hasn’t really progressed in terms of swallowing a PEG might help him to go to rehab and secure the placement there. In this instance it’s a matter of weighing up options. I always believe that a PEG tube makes people lazy to even try and do the swallowing tests etc… because the nutrition is taken care of. Given that your Dad has started to walk with a walker it might be timely to go to rehab with a PEG as long as there is a plan in place to get your Dad eating again. I.e. go to rehab and have private speech therapy.
ENT examined dad last week and reported his vocal chords have bowed. I don’t know what this means for recovery of his voice, which is still a whisper.
Patrik: ENT should have an opinion if swallowing issues and aspiration is stroke related or still a weakness from his prolonged and complicated ICU stay. I would ask them if I was you. The vocal cords might be damaged from the long period of breathing tube and then tracheostomy. Again, it all comes down to speech therapy and swallowing therapy.
I have started taking photos of his care plan and nursing notes. Would it be easier to send all images to you via WhatsApp, as I don’t know which are relevant and which aren’t – if you see what I mean!
Patrik: You could send them via what’s app, email, skype or you could just upload them in Google drive or Dropbox. Let me know if you are not familiar with google drive or dropbox and I can explain more.
The SALT input isn’t ideal as they lack resources. They said dad needs speech therapy every day but that they simply don’t have the resources. I wonder if we should buy in private speech therapy? They also said he needs hourly oral care, which happened on ICU but isn’t happening now!!!!
Patrik: I agree that he needs speech and swallowing therapy daily. I would make enquiries with private speech therapy in your situation. What’s probably more important is to find a speech therapist who has experience with ventilator and tracheostomy weaning and the complications and implications associated with it. Even though SALT might not have the resources, they may also lack experience due to your Dad’s case being really complex! Keep in mind, not many Patients in ICU need long-term ventilation with tracheostomy. The ones who do, need very specialized care and attention, ranging from medical, to nursing, Physiotherapy, dietician and speech therapist.
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Absolutely, still very happy to do the interview Patrik! I could potentially arrange childcare?
Patrik: Next week would be fine, no problem there. Let me know which day suits and I can work around you!
Hope I’ve covered everything, I’ll purchase the email package.
Thanks so much as ever!
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This is Patrik Hutzel from INTENSIVECAREHOTLINE.COM and I’ll see you again next week with another update!
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