2 months in; still fighting but her doctors want to stop treatment

[ChrissyJames]

I hope everyone has been doing okay these last couple of weeks. In my last post, I described how my mom’s blood pressure was low and her doctors wanted to stop dialysis. It was later revealed to us that her blood pressure was low due to septicemia related to bacterial pneumonia and that her doctors had decided to *permanently* stop dialysis. When my family realized this, we had some serious concerns because we felt her doctors made a premature decision to stop dialysis permanently when she hadn’t even been given a reasonable amount of time to fight the newest infection. We pushed for them to continue dialysis, and finally after nearly 7 days without it, she had dialysis again. Earlier this week her blood pressure improved as the infection cleared from her body and she no longer needed the Levophed medicine; however, we were just informed yesterday she has yet another infection in her blood. She is now requiring norepinephrine through an IV again to stabilize her blood pressure. This time, however, her doctors are going to run a full course of treatment to see how she does. And they have adjusted her dialysis so that it’s still filtering her blood but pulling little to no fluid.

My family and I are obviously still very frustrated that her doctors made the decision to stop dialysis permanently a couple weeks ago without fully explaining to us why and how they made such a critical decision without properly discussing it with us. Especially when they’ve told us that my mom, although battling septicemia, has had improvements in other areas. Her lungs have improved and one of her pulmonologist told us my mom can be given a tracheostomy and weaned (however before she could put in for that my mom would need to be off norepinephrine). Her doctors informed us that when they culture her blood and mucus, they’re no longer seeing bacterial pneumonia. There was also concern about a fungal pneumonia she acquired weeks ago, but thank God that was detected quickly. After several weeks of treatment, her doctors informed us that the spot that initially appeared in her lungs seems to have dissolved. She has no irregular heart rhythms. Her mental status continues to improve daily as she is making great progress with her meningitis/encephalitis. Of course, she is very tired and very skinny due to muscle wasting. She also has a sacral wound on her back that is having trouble healing because her body is expending all of its energy fighting infections. But I was able to see my mom, in person, earlier this week and I asked her if she was still fighting and she nodded her head yes. I told her we were gonna get her home, and she nodded her head yes. She isn’t able to speak because she is intubated with the tube. She isn’t sedated, and as she continues making progress from the meningitis she is more alert and aware. I just don’t see how her doctors made such a decision without really taking her into consideration....what she would want and also the improvements she has made.

Needless to say, it’s been a very tumultuous couple of weeks. She has been at this hospital for 2 months, but we just want to make sure she is allowed every opportunity to heal & fight. We keep praying and praying she stops getting new infections. This last month has been infection after infection. I know that kind of thing, sadly, is common in the ICU but we just want her to be able to come home sooner.

Again, I hope all is well with you guys. Where there is life, there is definitely hope! I see now why it is so important to not only advocate for your loved ones but also make sure you have people who will advocate for you.

[Sepsur]

Indeed. If I run through my journey - I entered ICU with strep A, avian flu, double pneumonia, sepsis moving quickly into septic shock and multiple organ failure, heart, kidneys & respiratory system. 2 weeks later I had severe ARDS, 2 weeks later they confirmed a type of leukaemia ( a further 2wks -they were categorical of type)I was 7 wks on dialysis whilst still unconscious. I picked up CMV infection, MSSA, EBV, VRE & HHV6 & glandular fever whilst still in ICU - because of the critical illness, leukaemia & use of various medications, my immune system was so compromised that I was susceptible to everything & seemingly, many of these viral infections if left untreated could lead back to pneumonia. I got to a point after 3 months in ICU & a week down on the ward, fighting off another infection, I wondered to myself whether I would ever escape hospital - I was so worn out by infection & treatment.

[ChrissyJames in reply to Sepsur]

Stories like yours are the reason so many of us cannot lose hope. Being able to see my mom and look into her eyes just reinforces my beliefs. They’re the eyes of someone still very much fighting the good fight. Four years ago, my family lost my grandfather to heart disease and diabetes. It was difficult to cope with at the time, as we were very close and he was only 72. But I knew looking into his eyes one day that he was ready. He wasn’t just physically weak...there was this type of heavy exhaustion I saw in his eyes that told me he was ready to go. Eventually, he decided to refuse medical treatment for several months and he passed in his sleep at home.

UPDATE: I have also just been informed by my mom’s nurse that she has been off the Levo for 12 hours 🙏🏽 Onwards & upwards.

[DrARDS]

Well done on continuing to fight for your dear mum! She sounds like a great fighter.

I can remember just how much of a toll it took on! I remember getting the daily reports of the CRP, the WBC, the oxygen status, the cultures they had and the many difficult conversations from some pessimistic doctors.

You must be gutted they stopped the dialysis without informing you? If your Mum can progress to a Trachy (ask for a percutaneous rather than surgical if possible), then this will help wean her off, though your post suggest she’s on a lot of NORAD and the docs are reluctant to do this? What have cardiology said?

Have they run any further special investigations? The pulmonary side sounds positive at least, alongside the alertness suggestive of good neurological function.

With regards to extra help for fighting of infection, find out what her HB is and other haematinics (b12, folate etc) A blood transfusion may help greatly, though some icu departments will only do this when it’s at like 75, which is bizarre? Also enquire about Vitamin D-a growing body of evidence to suggest this is a big factor in fighting off septicaemia and they don’t check it on routine bloods in icu. Also enquire on how much protein she is getting? They should be going for high protein to boost her energy resources and reduce muscle fatigue.

I would also encourage the staff/nurses to do foot praises and more regular bed turns to reduce pressure sores and muscle wastage.

A final thought, again something I noticed that wasn’t done to best practice for my loved one in icu-check that there are no issues with catherisation and good bowel movements-if not you need to push for more laxatives/new catheter.

We can only do so much, the rest is destiny.

Prayers and best wishes for you and your loved one! Feel free to DM me. X

[Alexa319]

DONT GIVE UP! Keep advocating for your mom! My sister and I went through the same thing as you with pessimistic ICU doctors and nurses. Our mom went into ICU at the end of April for pneumonia was ventilated, then trached but she was on levophed when she was trached so I wonder why that is stopping them. They did have to cancel bed side trach surgery the first time because her potassium levels were high but she was able to get it 2 days later. She is still trached and has moved from ICU to a long term care hospital where she has been weaning and breathing on her own for up to 12 hours at a time. She is also on dialysis 3 x a week. Her encephalopathy in the first hospital was so bad she was not following commands for the first 3 months but now she is able to talk to us with her trach, full on conversations she is very aware and wants to know when the hospital will start rehabbing her so she can come home. We are so happy she is off the levophed, weaning and talking to us the ICU doctors at the first hospital wanted to cease care and put her on a morphine drip it was crazy looking back. I haven’t told her yet but if she knew I think she would be so terrified. People are resilient keep pushing! Please feel free to DM me as well our experience sounds similar.