73 year old Mom in ICU/frustrated with US healthcare

[Kittycardigan]

After reading all your stories, and seeing the care that the UK gives it's people, my heart breaks even more than it ever could for our healthcare system here in the US.

My mom had a setback recently in ICU, she had to be intubated a third time and the doctor told us "tree strikes and you're out". Then told us tracheostomy or to just switch to making her comfortable. They started really being negative about the trach saying she will be dependent on it for life, and no facility will take her because she's on continuous dialysis. Etc... the worst part about this is my mom is awake and wants to live, she has always asked for all lifesaving interventions. Then they said let her rest, and she did start to get better, and they started to talk about extubation again, but told us the same thing if she can't breathe on her own then "comfort care" the doc asked if that made sense and she vehemently shook her head no.

I finally put my foot down, she has no one to advocate for her but me. The previous doctors had told me they wanted to see how she did ovee over the weekend and talk about what we'd do for her on Sunday or Monday. then the "3 strikes and you're out" doctor was gonna try to extubate her on Saturday! If I hadn't been there for rounds to tell him I asked the night doctor that I wanted a family meeting with the social workers and everyone there, I'd be looking at potentially saying goodbye to my mother. She is an extremely strong woman and they don't know her like I do. I feel like they are giving up on her and I feel alone. Trach is still an option, but they claim nowhere will take her for care because of the CRRT (continuous dialysis) I asked the doc if she's on the trach ventilatio does that mean she has to be on the crrt? And he told me "not necessarily". It's just making things so confusing.

My mom is a complex patient, she has a transplant heart and so is immunosuppressed, and so I understand their worry regarding infection. The reason she ended up in ICU is because she had an incarcerated bowel from a hernia, but managed to survive that with surgery, and only a couple minor setbacks there. It's now just her lungs and kidneys. The kidney doc says she has a good chance for them to come back online, it's just taking time for them. I feel like a trach would give her more time for her body to come back online, but they just don't want to do it because we don't have a robust enough healthcare system, thus nowhere to care for her. That feels like an incredibly wrong reason to say goodbye, especially when she's awake and signing ASL to me about what she wants to eat and drink when she leaves the ICU.

Thank you for all your beautiful stories, I found this place after she was struggling to come out of the sedation from surgery. And everyone's stories have brought me such comfort. Reading about how trachs improved the outcome for so many of you makes me hopeful. But I have to admit, getting details about how supportive the NHS is really hurts. I am actually in school right now, to become a sociologist with a focus on medicine, because of how bad it is here. This is strengthening my resolve to keep going that direction.

I guess I'm rambling a bit now, thank you all for listening, any words of encouragement would be appreciated.

[Rhyl1 Partner Moderator ICUsteps]

a percutaneous tracheostomy is a procedure done on the ICU here and used routinely here in the U.K. it facilitates the stopping of sedation without distress to the patient. Here in the U.K. you can request a second opinion from an independent doctor if you aren’t happy with care. I would recommend that you check whether that’s available to you in the USA.

[Kittycardigan in reply to Rhyl1]

Thank you for your reply. We had a meeting with the doctors today and it seems that part of the problem is that if my mother does need a tracheostomy there is no place in our area to care for her should she need it permanently, and we'd have to move her quite some distance away. I think the ICU doctors here in the USA look at tracheostomies from a totally different perspective. I've thought about a second opinion, but it can be difficult to get here. She has multiple doctors on her case, but they all work for the same hospital. They aren't unwilling to do it, but it's clear they don't want to because of logistics, insurance, transport, etc..

Right now, since she is totally off sedation the option is left to her. They painted her a bleak portrait of worst case scenario if her body can't support her airways on the next extubation, essentially she gets stuck on ventilation and dialysis forever with no improvement, and then left her to think about it.

Reading all your stories, the NHS seems to have a different approach with tracheostomies and ventilator weaning. If you've heard that the US healthcare system is barbaric, you are right.

Thanks for the support ❤️

[Lux95 in reply to Kittycardigan]

Any update? I am in the US and was in a smaller hospital and care was excellent. I was given a tracheostomy as I was not recovering under intubation (pneumonia), and was reaching the 2 week limit where intubation becomes more dangerous than beneficial. My impression is the trach is pretty standard here in the US too. I began recovering with the trach, but only had 3 types of pneumonia and ARDS, not the other issues your mom is facing.

It sounds to me like this is specific to your mom's dialysis and the potential need to move her. Everything going on at once does complicate things quite a bit. A trach would increase the risk of infection. I wanted to go home more than anything, but they wouldn't even consider moving me out of the ICU until the trach was out and I could stand and walk across the room.

I was healthy, active and ran several miles a week before the ICU. It takes a very heavy toll, especially intubation and sedation. Three times is a lot for the body to handle. Can she stay there until the trach can be removed?

Regardless of negativity you will get from some doctors, she has you advocating for her, and that is worth more than a room full of them.

[Raising8]

Hi,sorry for what your mum and you and family are going through. I'm in UK,is it possible to get her transferred to the next nearest state or get advice from the next nearest one? All the best to you and your family x

[Mjnatalucci]

i am dealing with the same thing! Dad is on vent and dialysis after pneumonia. he was almost weaned off the oxygen all together when they thought he coded and then sedated and intubated him. It was a low BP event and not cardiac arrest but he was off the monitors getting a scan so they didn’t know and started CPR and now we are stuck with the vent. Trying to wean him off and got him up to 7 hours on a trach collar but running out of time at the LTACH. Need to move him to a vent facility in a few days…which is out of state. I have been fighting it for weeks…shocked that there is NOWHERE for him to go near me. The LTACH is barely trying to wean him…they are so short staffed they just keep everyone on full support or when I hound them about it will put him on pressure support but they keep saying they don’t want to do the trach collar on “dialysis days” which is 3x a week. Yet the nephrologist says from his perspective weaning in not contraindicated with dialysis. But he leaves it to the RTs to decide. And it’s a vicious circle. As one nurse told me when i was complaining about all of this…he said this is not “healthCARE but healthBUSINESS” and that is sadly true. They are truly making no effort to wean my dad and just want to turn over the bed now to someone who isn’t stable where they can make the big bucks and park him in a vent facility. It makes me sick.

[Mjnatalucci]

also my dad’s mentation is not great…took a while to come out of sedation…so they keep saying he’s not responsive enough “to protect his airway” when i bug them about weaning…yet when i am there and i play his favorite music he will turn to me, smile and nod when i say “you like this song, right?”. Yet they say he’s unresponsive. Because they come in for 2 seconds and rapid fire questions at him and he’s just fixated on something else and ignoring them.

[Justlikeyou]

It's all very confusing and scary and they aren't very supportive. I say pray for your mom and stay firm. Don't let them push into doing something you don't want to do or you'll regret it forever.