32 days

[Imperfect89]

32 days my mums been in ICU they’ve said they’re no longer going to give her antibiotics for the infections in her abdomen as they aren’t working.

She’s fought everything this far and weaning off the vent is going well.

she’s experiencing fevers and low grade high temperatures due to this infection and the doc has said that if she continues they’ll just make her comfortable and prepare her for a dignified death.

I’m confused as she is getting stronger physically by the day and her weaning is going well despite the infection.

So confused.. can anyone off some advise. Is this just the doctor being overly cautious with bad news..?

[Sepsur]

that is very confusing. I hope more promising news over the next few days.

[Imperfect89 in reply to Sepsur]

He has said that the infection together with being in icu for 32 days it’s just not promising enough to continue the anti biotics as she is still so weak. He sees no progress on paper. However, the visual progress i see doesn’t match what he’s saying - this week.

She’s overcome a septic shower from Tuesday and has been reduced off the vent by almost half. And is able to move her arms, legs and bum more than she ever has.

She’s even said what can I do to help myself because I’m just sat here, and I want to help myself get better.

I’m considering protesting the anti biotics if she becomes highly feverish again but I’m unsure if I can, with it being the doctors decision.

[Sepsur in reply to Imperfect89]

Ask for a second opinion - is one option - (the hospital doesn’t have to grant it).

You are advocating for your mother because she is not in a position to do so. Your Mum is savvy enough to know she needs help - that would suggest everyone around her has an obligation to do so.

If the broad spectrum antibiotics aren’t working, yet she is improving seemingly, can you ask for alternative treatments.

There is also a body called PALS - which should be housed in the hospital somewhere - they ‘should’ advocate on your behalf.

I hope you get some joy.

[Rhyl1 Partner Moderator ICUsteps]

You are entitled to ask for a second opinion about your mum’s care. Keep fighting for her

[JBean123]

I’m sorry to hear of your struggles, my Dad spent 89 days in ICU over summer and we were told 4 times that there was nothing more to do; at one point we were minutes away from them administrating morphine to make him more comfortable but we kept questioning everything and asking for more time and now he is at home and recovering well, after learning how to walk and talk again in September and prolonged trachi weaning.

My Dad had became resistant to anti biotics, broad spectrum no longer helped bring his infection markers down… it might be worth asking for a meeting and going prepared with lots of questions written down (also write the answers down because so much is usually said that it’s easy to forget the details after and just focus on the scary things that have been said).

Ask them why they are not seeing the improvements on a medical level, and then asking if they can take cultures to find a localised antibiotic that will treat infection. I used to ask ‘if he was 25 not 65 what treatments would you be doing’ and if there is an answer then I would say ‘well try it then’… it’s better than nothing. Especially as your Mum is awake and talking. My view was always if he still had his cognitive function (though at one point his delirium was so bad) then I would push and push for them to try everything.

Keep strong for your Mum, I’m praying for you x

[Lux95]

I also encourage you to keep fighting for her. Get a second opinion, or whatever it takes. When her physical state seems to be improving that seems to be evidence enough that something *is* working.

[Westbeginners1]

I was in a very similar situation earlier this year with my mum. She was in ICU for 2 months, she was intubated and then had a tracheostomy for majority of this time.

She weaned off it all and was starting to move about and was becoming more like her old self. She got moved to a ward and developed pneumonia. After a week of antibiotics the doctors said she wasn’t responding to them and put her on mad her comfortable. Sadly she passed away a week later.

I still feel like I should have tried harder for more time more antibiotics but looking back now. Maybe she was too weak.

I know this is not what you want to hear, Ty think about the life they will have if they recovered, if it would be one they want, fight fight fight x

[Twoblu]

Seek a second opinion. You are allowed to do that. I believe you can ask for your mums treatment to continue. As you say, weaning is going well. Ask for a chat with the Consultant. They can explain things properly.

Sorry you are going through this right now. Hang on to hope.

[Sepsur]

how is your Mum?

[Imperfect89]

she has improved! There is now progress on paper and the doctors spoke to me and reassured me that they would actually be re evaluating every day and that they would not leave her. The wording of the doctor was not best served.. we have both clinical and physical improvements!

Thank you for asking 🖤

[Sepsur]

positive steps forward 💙

[Ohgollyitsmolly]

How’s your Mum doing?

[Imperfect89]

she’s come off the vent today onto oxygen

[Imperfect89]

hi everyone! Over a year later and my mum is fully back on her feet and thriving! Thank you for all the support xxx