Hi, it’s Patrik Hutzel from INTENSIVECAREHOTLINE.COM , where we INSTANTLY improve the lives of Families of critically ill Patients in Intensive Care, so that you can 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 one of our readers and the question last week was
You can check out previous questions from Ellie regarding her Mum here
In this week’s episode of “YOUR QUESTIONS ANSWERED” I want to answer another question from Ellie because Ellie’s Mum had to go back to ICU.
“My Mum has been in ICU for three weeks now and she is on ECMO for ARDS! Will she survive?”(PART 6)
so my mum is back in a side room in ICU now and on 80% oxygen with the opti flow nasal prong! She has Pneumonia with pulmonary oedema . She’s been on super strength antibiotics for 24hours so hopefully by 48 hours it will kick in? They keep putting big space mask on (BIPAP or something like that) which she hates. They have ventilation option in waiting just in case, which I’m praying they don’t use, of course.
She has the strength in her arms and legs now and she can claw off the mask with her left hand . She even tricked my brother last night when giving her water with sponges And she asked to hold the cup , then drank the cup by pulling to her mouth! She also fell out of bed a few days ago as she managed to swing legs round slowly and pulled herself up! Her reason was she was practicing her Physio! Amazing to see her strength coming back and hoping not to lose all of that by ventilating her again. I have asked that she is not given muscle relaxant this time .
I’m really not keen on her doctor this week who is very brief and full of cliches. He keeps mentioning her critical myopathy and weakness but she’s actually getting stronger and if she had food , water and sleep (she got no sleep last night as they didn’t give her her sleeping pills as they were assessing her every hour) she would get so much stronger. Before this infection they were talking, about trying her walking within a week!
The doctors reason for not eating and drinking is that he thinks it’s aspiration (as I mentioned before) but she doesn’t choke or cough when she has food and water now and I believe her swallow and cough is stronger than he is aware of big he only seems to want to talk in sweeping general terms and not specific to her. I believe the swallowing tests are ludicrous (with water test 2 weeks ago being a teaspoon of water suddenly given to her which is completely unnatural)
My theory for why she got this infection is that she was given strawberry yoghurt 3 tunes a day and super sweet milkshake (fortisip) every 2 hours and was not given mouth care in the normal ward . It was good in the HDU and ICU in London was obsessive and she wasn’t even eating then . They didn’t do any except maybe twice aday and I believe that the bacteria in her mouth multiplied and got into lungs. I wish I had insisted on it and insisted in giving her veg soup instead of yoghurt as she’s diabetic anyway and shouldn’t have sweet stuff.
Anyway it’s all very frustrating . Thanks for reading . Will update you with any other news. I didn’t realise this saga would go in quite so long! It’s good to be able to write and know that you know what I’m taking about.
I’m so sorry to hear that your Mum is back in ICU.
It’s been a hell of a ride for you and your Family and there just seems to be no end in sight.
I can’t tell you from afar why the infection has come back.
The lack of mouthcare on the ward may well be a contributor and you’re correct to point that in ICU/HDU we are obsessed about mouthcare, especially when Patients aren’t eating.
The lack of food on the ward and the lack of proper and regular mouthcare could have contributed to the infection coming back and at the end of the day it’s all speculation.
Of course what you have also mentioned repeatedly is that the infection could always come back because of her previous “holes” (Pneumothoraxes) in her lungs with an infection.
Also, you are correct to point out that lack of proper nutrition and also lack of proper and speedy assessment from speech pathology may well contribute to the infection coming back.
What I don’t understand is did they keep feeding your mother via NG(Nasogastric) tube or PEG tube(a tube into the tummy via the abdomen). This should have been happening whilst your mother was or still is unable to eat properly.
This would have been and still is crucial going forward to give your mother the nutrition she needs whilst she still is unable to eat.
As for now whilst she is back in Intensive Care, they will hold off any feeds because not only for need of assessing her breathing but also if she needs ventilation she needs to be nil by mouth. God forbid for your mother going back on the ventilator.
What they might do is putting her on BIPAP ventilation(mask ventilation) if opti-flow nasal prongs needs escalation.
The BIPAP may well keep her off the ventilator with a tube and whilst uncomfortable, it’s certainly the better option compared to the ventilator with the tube in her throat!
As far as your Mum’s Pulmonary oedema(=water in lungs) goes, I am wondering why she’s in Pulmonary oedema?
Did they give her too many fluids, did she drink too much, are her kidneys not working properly or did they mention anything about her heart being weak and not coping with fluids?
The things that I mentioned tend to be the main reasons for pulmonary oedema.
Pulmonary oedema(=water in lungs) should not be underestimated and can well lead to ventilation. What they should be doing is to give your mother some Frusemide(Lasix) which is a diuretic drug that increases Urine output and gets rid of excess fluids.
The main thing now is to keep your mother off the ventilator and have the Tracheostomy go back in.
Therefore the BIPAP may well be the way to go even though it’s uncomfortable.
Ellie, it is the unfortunate reality that after a long critical illness setbacks do happen and I have seen many Patients who stayed in ICU for a long time coming back and still going out again alive and eventually going home!
I know you and your mother are living through your worst nightmare ever and you need to stay strong, as you have been coping remarkably well with all the challenges and setbacks!
Here are some links to everything you need to know about BIPAP
I hope that helps Ellie!
Let me know if you have any questions
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Thank you for tuning into this week’s “YOUR QUESTIONS ANSWERED” and I’ll see you again in another update next week! Make sure you also check out our BLOG section for more tips and strategies or send me an email to [email protected] with your questions!
This is Patrik Hutzel from INTENSIVECAREHOTLINE.COM and I’ll see you again next week with another update!
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