Sister back on ventilator

[ajpc72]

Hi, I'm new here but needed to get this off my chest. My sister has been in ICU since 28th January. She developed a deep wound infection about six weeks after a triple heart bypass. She was admitted to hospital for a few days but then developed sepsis. She was put on a ventilator and intubated for 16 days. After being extubated the consultant said she was making a slow but good recovery and they were planning her rehab. He did say that she seemed very deeply depressed which is obviously understandable. This morning we got the news that she had an uncomfortable night and was struggling to breathe and she has a chest infection. They are giving her assistance from the ventilator but may have to put intubate her again. This has devastated us after she was showing signs of recovery after a roller coaster of a month. Emotionally, I'm not coping well and just need to get this off my chest. I'm sure many people have experienced this sort of thing. How do you cope with all the ups and downs. Struggling to think clearly today. Thanks

[FamilyHistorian]

How do you cope? First of all you must look after yourself.

And yes it could be a long road. I had heart op before Christmas’19 I had pneumonia sepsis and other infections. I had a trachy was sedated and ventilated for nearly 2 months. I was very slow to come round. I came out of hospital mid March ‘20 and recovering slowly.

[LeopardGecko]

Unfortunately critical care is a rollercoaster ride of emotions. With my husband I always felt as if a big set back always followed some great progress. He seemed to have a constant stream of infections which I believe is quite common in ICU.

As FamilyHistorian said - you must try your best to look after yourself as your sister will need you.

Things that I did to try to cope:

* Writing a diary each night to get the day out of my head to help me sleep.

* Trying to get out for a walk and some fresh air as much as possible.

* Taking up a simple hobby to keep my brain busy (I made friendship bracelets for our ICU which were given to patients and their relatives).

* Eating little and often if I didn't have much of an appetite.

I also discovered ICU steps Chester relatives group who have been absolutely amazing. A wonderful group of people who have all lived or are living the ICU rollercoaster and who could understand exactly what I was going through.

I hope you start to hear some more positive news soon xx

[ajpc72 in reply to LeopardGecko]

Thank you for your kind reply.

I couldn't agree more. Relief and elation on a good news day seems to be followed by despair the next and vice versa. I try to go for a walk every day to clear my head. I know it sounds silly, but I find myself talking to her in my head and asking her to be strong and that she can get through this as if it would help.

I think that each time I do something positive like start to think of all the preparations we will need when she eventually comes home (we are told that after ICU she will be in hospital for several weeks) we are hit with another downturn and it all seems pointless. Still I have to force myself to be positive. I think the frustration of not being able to visit or help her is adding to it all.

My eldest sister facetimed her the other night but she could not speak and turned her head away. We think that it's because it may be the first time she has seen herself looking so poorly since was admitted. I am desperate to help her in whatever way I can.

Thank you for your kind words of advice.

[LeopardGecko in reply to ajpc72]

I completely understand the helplessness. My husband spent 2 and a half months in ICU and then spent another 3 months in HDU/ward and rehabilitation centre before getting home so it felt like forever! There's nothing wrong with thinking ahead to the future but just try to manage your expectations and expect some setbacks along the way. We are so used to seeing people in films waking up from comas and basically jumping out of bed that I don't think we are prepared for the reality. I had no idea about muscle wastage and the rehabilitation that would be needed.

I would suggest continuing with the communication if you can as I am sure that it helps the patient to hear familiar voices. If you think she doesn't like seeing you, maybe it could just be a phone call or send her video messages so that she can see you.

You would be welcome to join the Chester relatives group if you wanted a safe place to talk and there is also a new Facebook group that has been set up as well.

[ajpc72]

Thank you, FamilyHistorian and yes, you're right; must look after myself or I'm no use to her. Eating properly and doing the housework, going to work, etc.But it's very hard to focus and I'm due to do the night shift tonight but feel incredibly anxious.

I'm glad you are recovering from your ordeal and it gives me hope reading about all those who have gone through these setbacks and come the other end.

[Sepsur]

My wife always said that an hour waiting outside ICU was like a day anywhere else, she dreaded being there and she dreaded not being there.

The emotional rollercoaster of ICU drains everyone of energy, keeping a vigil waiting expectantly for something to happen is awful whether you are outside the ward, outside the hospital, sitting at a bedside or sitting at home, fretting.

My wife said she waited at my bed because although she wanted to, it was also because she was terrified that something would happen & I would take a turn for the worse or die when she wasn’t around.

My wife said she couldn’t make sensible decisions at first - she was embroiled in the awful soap opera of what was going on. She got to a point, in fact all my family got to a point were they had to take breaks - hospital food isn’t all its cracked up to be either.

She also realised she needed to take exercise, it gave her time to work out her feelings and raise much needed endorphins.

She struggled with people’s optimism - she found she had to have realistic outlook - neither ridiculously optimistic or unduly pessimistic - people meant well when they said “It will be Ok” but that didn’t really help her with her emotions - in fact it made it worse - she wanted to ask them since when were they an ICU expert? It was a rollercoaster ride, one minute optimism filled the room only to be sucked out as soon as the consultant did their daily summing up.

I was often brighter in the morning and would dip at night - so my family started to anticipate the early hours call saying they should come and say their goodbyes, anxiety and sleeplessness took their toll.

She started to ask very specific staff about my wellbeing - certain staff had a poor sense of emotional intelligence whilst others were brilliant - ask who you are talking to if you phone in & find them sympathetic & approachable.

Controlling the barrage of phone calls and messages was a task - a good family friend took on this job - disseminating the daily update of information about me to who needed to know, my family found this exhausting. People would turn up at the door and expect a full disclosure without considering it’s impact.

I know that many relatives will not have the luxury of talking face to face with medical staff or seeing their loved one at this time. You may have been spared from seeing things that you will never be able to unsee. My wife is traumatised, 4yrs on, by the first time I was proned for instance, although there are numerous other occasions.

This forum is a brilliant forum - but there is a network of groups out there - we run exercise & yoga groups for critical care patients and their loved ones. We have a general drop-in meeting & relatives drop-in meeting every week. If you are looking for answers or just wish to aid your own rehab, wellbeing - why not try us out. Our sessions are free and funded by ourselves. Free doesn’t always mean second rate.