Prolonged ICU stay Advice needed

[ForMyPapa]

I have posted here about my dad who is in ICU for severe pneumonia (3 weeks intubated, 1.5 week trachy). Initially, he went to the hospital for a minor operation to remove a benign cyst from his throat and acquired pneumonia in the hospital after the surgery. After switching to trachy, they tried to wake him up once and his blood pressure, saturation, and breathing became wild and coughing started so they sedated him again. When sedated, his saturation is 93-98%, O2 is 35%, EtCO2 is 46-47, respiratory rate is 30, PEEP is 5. The pressure setting on the ventilator is 24. I don’t really know if we are even close to weaning off….

The problem is that my mom and I developed a little trauma from talking to the doctors and getting updates as the last few times they only said something like “he will not last a week” or “It is not getting worse but it is not getting better so he may slowly decline”. We really cannot take another poor prognosis. Although we go to the hospital every day, we haven’t spoken to his doctor for a week and half since the trachy was fitted. We have only spoken to the nurses who mentioned there has been small progress shown in x-ray but they suspect his lungs are getting permanent damage.

What should we do? They haven’t approached us with any updates either. They haven't taken back their prognosis of "he has only one week left." We want to know what is their plan regarding weaning him off from an induced coma and if there is any progress with pneumonia. But it is really scary to ask them.. How often should a family touch base with doctors? And how does everyone stay brave talking to the doctors?

Thank you everyone in advance.

[FamilyHistorian]

In the UK we have group cc-sn.org/ which amongst other things supports relatives. The relatives meet on zoom every Tuesday at 2000 BST (our clocks change at the end of this month) . The majority of those have gone through the same as you. We do have people dropping in from around the world but I don’t know what is the time difference Japan.

In the UK we also have an organisation called PALS based in each hospital. They can help with being your advocate. You may have something similar over there.

[ForMyPapa in reply to FamilyHistorian]

Thank you! Yesterday my mom and I did some research and we found a patient care center at the hospital. It seems like we can talk to a social worker about different concerns, so I am going there this morning!

It would be so lovely to join the zoom support group. I will try next Tuesday. Time difference is a bit hard but therapeutic needs surpass the need for sleep at the moment! I couldn’t really find any online support group for ICU families in Japan (or in the US where I usually live and work). This group has been my safe place. I have heard great things about UK’s NHS. You guys are so advanced and organized. Thank you again!