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
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 last week was Part 1 of a counselling/ consulting session with one of our readers and the question last week was
My Mother is in long-term care with tracheostomy, on the ventilator and in kidney failure? When is enough enough? (PART1)
You can check out the answer to last week’s question by clicking on the link here.
In this week’s episode of “YOUR QUESTIONS ANSWERED” I want to answer PART
2 of the consulting/ counselling session with Dawndeena
My Mother is in long-term care with tracheostomy, on the ventilator and in kidney failure? When is enough enough? (PART2)
This formed part of a two part phone/Skype counselling strategy session for one of my Clients who signed up for 1:1 phone/Skype counselling with me.
Dawndeena writes
Hi Patrik,
Today while visiting my mom the respiratory doctor was there and he
told us our mom's lungs are getting worse. They've gotten most of the fluid off through an IV(intravenous) drip of Bumex, but now they're saying most of it is inflammation.
The doctors also told us that last night they had to put the ventilator on rescue mode but was able to remove her from that this morning.
They're putting her back on steroids which by the way is the ONLY thing she seem to respond too. I told him that on Tuesday when we met with him and he kinda blew it off by saying she gets a
Prednisolone tablet 5mg everyday.
It seems like with the steroids it’s either an IV drip or a very low dose in a pill form.
Why can't they give her something in between??? We also don't really care for the facility she's in. This is the 2nd time she's been here and each time she seems to get worse than
she was before when she was in an ICU unit at the hospital.
Is it possible for us to move her back to the hospital? Is it something we just request?
The doctor told us today this was his last resort. Well in the beginning when all this started and we were at the hospital the last resort then was steroids and
she made a remarkable recovery.
Then take her off she slowly declines. We're really frustrated with the care she seems to be getting. Just really getting lost!
Thanks,
Dawndeena
Hi Dawndeena,
thank you for your questions.
I am very sorry to hear that your mother's situation hasn't improved- if anything, it's gotten worse.
If the Bumex
worked for getting rid of the fluids on the lungs and they now think that more fluids on the lungs are caused by inflammation, it most likely suggests that your mother has some sort of infection.
Given that the lungs are deteriorating it could well be acute lung failure or ARDS. (click on link for more information about acute lung failure)
I obviously can't diagnose from a distance and I am talking from clinical experience.
It's most likely because of that, that she may respond well to steroids.
If your mother's lungs are deteriorating and they can't manage it in this facility then it might indeed be that her best option is to go back to Intensive Care!
If your
mother isn't improving and is going downhill fast, they think they can't manage it and given that you are unhappy with the care and treatment your mother has been receiving anyway, then you should in fact get her back to another hospital and back to Intensive Care.
Inflammation on your mother's lungs might warrant a readmission back to Intensive Care, because again it’s very likely that she has acute lung failure or ARDS.
That’s also why the
doctors had to put your mother in another ventilation mode overnight. The signs are there.
For ARDS or acute lung failure, there are a few treatment options such as high frequency oscillation ventilation, proning or ECMO. You can find more information about those therapy options on our website.
But all those treatment options require for your mother to go back to Intensive Care as they tend to be unable to offer these therapies in a long-term facility…
And also as a
side note, if your mother doesn’t go back to Intensive Care and stays on the ventilator with tracheostomy, check out INTENSIVE CARE AT HOME. www.intensivecareathome.com.au
INTENSIVE CARE AT HOME is a
specialised service provider looking after ventilated Patients at home with tracheostomy. This provides a genuine alternative to a long-term stay in Intensive Care/ long-term care facility.
And yes, you need to ask for a transfer if that's what you want and it sounds like it's clinically indicated as well. Don't take "no" for an answer. The team there might refuse for a number of reasons, including
financial aspects and you need to know what you want and go for it.
Related article:
You really need to get comfortable with starting to proactively manage the Intensive Care team, so that they don't manage
you.
Don't be intimidated by the "perceived power" and "perceived authority" of the Intensive Care team.
Related article:
Given that your mother has a Tracheostomy and has been ventilated for a
long time, here are some recommended resources as well:
Stay positive Dawndeena and please let me know when you want to go on Skype again.
Take care
Patrik
There is no situation in Intensive Care that I can't help you with or that I haven't seen!
Skype ID patrik.hutzel
phone 415- 915-0090 in the USA/Canada
phone 03- 8658 2138 in Australia/ New Zealand
phone 0118 324 3018 in the UK/Ireland
If you have a question you need answered, just hit reply to this email or send it to me at support@intensivecarehotline.com
Or if you want to be featured on our PODCAST with your story, just email me at support@intensivecarehotline.com
phone 415-915-0090 in the USA/Canada 
phone 03 8658 2138 in Australia/ New Zealand 
phone 0118 324 3018 in the UK/ Ireland 
Phone now on Skype at patrik.hutzel
Your Friend
Patrik Hutzel
Critical Care Nurse
Founder& Editor
WWW.INTENSIVECAREHOTLINE.COM