MY AUNTY IS IN INTENSIVE CARE ON ECMO FOR ARDS, WE’RE VERY WORRIED SHE MAY DIE! HELP! (PART 10)

Published: Mon, 09/28/15

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 our readers and the question last week was PART 9 of

“MY AUNTY IS IN INTENSIVE CARE ON ECMO FOR ARDS, WE’RE VERY WORRIED SHE MAY DIE! HELP!” (PART 9)

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 another question from one of our readers and the question this week is PART 10 of

“MY AUNTY IS IN INTENSIVE CARE ON ECMO FOR ARDS, WE’RE VERY WORRIED SHE MAY DIE! HELP!" (PART 10)

Today Angie, the mother of Lee who wrote in previously, has written in about her sister’s progress.

During the time of the consultation I was interacting with both, Lee and Angie(Lee’s mother). Lee was the first person to make contact about his Aunty being in ICU and as the consultation progressed, I was interacting with both, Angie and Lee.

Angie from the UK writes

Hi Patrik,

thank you we are ok at the moment, hope you are ok.

My sister was doing well the first few days of being weaned off the ventilator however on the fourth day she had a big set back and they had to discontinue with it, she also caught pneumonia again and MRSA, and they had to put the central line back in again, she still continues to have severe diarrhoea, I did question them if they had expected too much too soon. they wouldn't reply to that.

It took a while for her to recover and is still now bringing up a lot of secretions the physio who has been amazing is so pleased with her progress re: her limbs and the strong cough that she has, my sister is now able to get out of the bed with their help and a zimmer frame and into the chair.

On Monday a consultant put a new weaning plan in place and they are allowing her to speak for a couple of hours during the day (without the speaking valve) something to do with the cuff on the tracheostomy, after researching the internet on different types of the weaning process ( I didn't want to bother you in case you was busy with new families that needed your time )

Recommended resources:

ONE ON ONE CONSULTING WITH PATRIK

I asked the nurse if they were using the SIMV mode and she quite nicely explained another mode but that I wouldn't understand it all , none of the nurses or doctors offer any explanations and said that if there was anything to discuss or serious set backs then they would ask to speak to us then.

Last Wednesday after giving my sister a pedicure, the following day I noticed a rash on the lower left leg and told the nurse, they told me on the Friday they are keeping an eye on it, it is still there but doesn't seem to be spreading.

I think some of the staff are on their guard with us because I know we are asking questions all the time , we have had a couple of run ins with them especially when my sister has had setbacks and I reminded one of the junior consultants that the person on the bed was my little sister and not just another patient and how would they feel if it was there little sister wouldn't they want someone to help them fight for their life, the doctor was clearly stressed and admitted that he was worried he nearly lost her and he agreed he would want that for his loved one.

We have had a discussion with some of the nurses around my sisters mental illness ( she showed no signs of it or any induced coma symptoms) I requested that any complex issues be discussed with myself or Lee to alleviate any stress for her.

One of the difficult nurses told me that there was a protocol to follow if she needed any special treatment.

I was only offering them advice on how to manage my sisters illness and not to let her be aware of how seriously ill she had been ( my sister would not be able to understand and would completely stress herself out)

I told them we would explain it all to her when she was much better in her own surroundings with all of the support she needed.

I feel they think I’m trying to control everything and some of the nurses are very understanding and brilliant, but I’ve realised some of them just go through the motions, I’m beginning to think just what is acceptable to ask them without feeling I’m being awkward or difficult.

Hope this gives you the information on her progress, I don't have any information on how long she will remain on the ventilator or anything else, except she is going to have some sort of swallowing test on Thursday from the speech and language therapist.

Many thanks Angie.

Hi Angie,

thanks for your update.

I think given the bigger picture and given where your sister started a few weeks back, she seems to be tracking well.

Setbacks after a long standing critical illness can happen and are nothing unusual.

Being weaned off the ventilator with tracheostomy, especially after ARDS and ECMO is often not straight forward and setbacks can happen.

If you have read through the challenges Ellie and her Mum had to go through, it doesn’t surprise me that things are not straight forward, however given that your sister is now out of bed with the Zimmer frame, has time off the ventilator and she can start talking, that is just amazing!

I know it must feel like an eternity for you and for your family to watch your little sister suffer her ordeal in ICU, but it sounds like she has come a long way from when you and Lee first contacted me.

However with all the challenges and setbacks you and your family should not and never think that you are asking too many questions or that you are too difficult.

The Intensive Care team has clearly sensed by now that you are different and not like 99% of the families in Intensive Care who are intimidated by the “perceived power” and the “perceived authority” of the Intensive Care team and who therefore will never have peace of mind, control, power and influence.

The Intensive Care team by now is well aware that you have just as much contributed to get your sister on her way to recovery than they have.

You should never think that you can’t ask any questions. Intensive Care is challenging but they need to be transparent in their dealings with you and your family and they need to answer your questions.

Intensive Care teams are like “fish in water” and you are like “fish out of water” and therefore it’s only fair that you keep asking questions.

Continue to ask questions and don’t be shy about it. Don’t do what other people do.

Recommended resources:

ONE ON ONE CONSULTING WITH PATRIK

As far as the ventilation mode for your sister goes, they wouldn’t be using SIMV by now. SIMV is a controlled ventilation mode where the ventilator delivers a set rate of breaths per minute.

Therefore SIMV is usually a mode only being used when Patients are in an induced coma.

By now your sister would be in a spontaneous mode, either in CPAP or Pressure support mode.

That means that your sister has to trigger every breath herself by overcoming resistance in the ventilation circuit that sets off another breath from the ventilator.

That keeps her getting stronger if she can manage to trigger breaths.

It’s good that you are advising the Intensive Care team that you want to be involved in managing your sister’s progress as it relates to her mental illness.

I am by no means the expert on mental health and often the Intensive care team isn’t either. I would imagine that at one point they might get a Psychiatrist involved.

Overall, I think your sister has really gone a long way and I know you will be staying strong for the rest of the journey.

Please let me know if you have any other questions.

I would also be really interested in doing an interview at some stage and 20-30 minutes of your time would be really appreciated.

I think that you could share some valuable advice for other families in Intensive Care who are in a similar situation.

I know that when Lee first contacted me that you and your family thought that your sister wouldn’t survive her ordeal and I know that many families feel that way, whenever they have a loved one critically ill in Intensive Care.

It’s a horrible feeling to have and often Families in Intensive Care need that perspective so that they know that there is hope and that there is often a way out.

Let me know if you would be willing to share your story, it doesn’t have to be now it can be at a later stage when you feel ready for it.

Take care

Patrik

Skype ID patrik.hutzel

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