Mom in ICU & depending on ventilator to breathe

[ChrissyJames]

Hello, again.

In my first post, I detailed a lot of what my mom is currently experiencing in the ICU. Initially hospitalized for lupus and acute kidney failure, she has also had to battle a heap of infections. First sepsis & now viral meningitis and a fungal infection in her lungs. She’s been in the ICU for a total of 6 weeks. Thankfully, the sepsis has been put under control; she’s just finished her course of antibiotics for it. But now, she’s dealing with meningitis, encephalopathy, and an acute fungal infection in her lungs. She’s been on a breathing tube since June 9; they intubated her when she started showing symptoms of meningitis. Since then, her breathing on her own has declined. Prior to the meningitis, she was breathing on her own with minimal supplemental oxygen from a tube in her nose. Now, her doctors are telling us that she’s relying on the ventilator to breathe for her due to the meningitis and encephalitis. This was 3 days ago when she started needing the ventilator to do all of the breathing for her. We’ve been told now they want to give her 48 hours to show a turn around...it’s sounding like they want us to make a decision.

I’m just wondering if anyone has any sort of experience with this? She has an acute fungal infection in her lungs which they are actively treating with a very strong anti-fungal medication that is highly promising. Aside from one spot they found in her CT scans, her lungs are clear. The problem is neurological it seems. Also she’s been on very strong immunosuppressants for her lupus. They’ve withheld those for the last two weeks to allow them to flush from her system and have her immune system kick in to help fight infections.

I just don’t understand why they’re so impatient. Please send some love to our family during this troubling time.

[Sepsur]

Please don’t be pushed around, ask for a second opinion, ask for anything!!! But delay as tactically as possible. Many of us on here had serious co-mobidities, but we didn’t die as expected - sometimes on multiple occasions we just refused to die despite the likelihood. I hope your Mom shows improvement soon.

[ChrissyJames in reply to Sepsur]

Yes, my family and I are adamant now about not letting the doctors sway our decisions. I’m actively trying to stay on top of what medications she’s on and do my own research. I feel like her doctors keep trying to rush things; I understand they’re working with their own timeline and that she’s literally fighting for her life, but in addition to the treatments she’s receiving perhaps the greatest treatment of all is time. My mom isn’t comatose. She wakes up when they call her name. She can’t do much more than that right now, but she’s in there fighting!! It’s concerning she’s not able to breathe sufficiently on her own right now, but the only thing that could possibly be related to is the meningitis. Just a week ago, we were told it could take 3-4 weeks minimum for the virus to run its course. We will continue to advocate for her....

[Sepsur in reply to ChrissyJames]

I had quite a serious chest infection last week ( nothing like your Mom) they couldn’t get my saturations up so they put me on oxygen at night - don’t worry about ventilation if it’s working 😊

[ChrissyJames in reply to Sepsur]

I hope you are feeling better and recovering from your chest infection!! And yes, the ventilation is working for her. Thank you for your reassuring words 😭