Being Vent Dependent

[Livinglifeachday]

Yesterday night, I finally received a call from my mom's doctor at the rehab hospital she is currently in. I asked him a series of questions, one of them being why her vent setting had not changed much since she was admitted and that to me it seemed like her fio2 levels seemed to be going up instead of down and was not making much progress compared to the previous hospital she was in. To my surprise he said that they had stopped weaning my mom and that she was going to be vent dependent basically for the rest of her life. I was not aware of this at all! Why didn't they bother to give us such an important update when they made this decision. I had recently talked to her nurse case manager for an update and plan and all she said was that they were getting ready to transfer her to a subacute care facility as soon as a bed became available but did not mention that weaning attempts had stopped. NCM went as far as to tell me that she could possibly be discharged home (on vent) as long as the family received the proper training beforehand to care for her. We would much rather have her home than in a subacute facility. I Also asked the doctor if this would be possible in the near future and he said no. That she would never be able to be discharged home. This completely broke me! I don't know how to help my mom, I have not gotten the courage to tell the rest of my family. I am concerned for how my father will take the news. I know I need to tell them soon, but how can I break their hearts like the doctor broke mine. At this point I'm trying to do research on options my mother might have (lung transplant) She is still young has so much life ahead of her. I have been her advocate from day one, and I won;t stop until all options have been exhausted. Again, sorry for the long post, I just don't know what to do.

[Rhyl1 Partner Moderator ICUsteps]

You need some support in your battle for your mum, you can’t do it on your own. Try to find someone in the family to confide in and once you.have this you have to tell everyone concerned. You must tell your dad as you are just avoiding the inevitable. He would want to know so he can join the fight for your mum. You have to look after yourself as this is a heavy burden to bear alone.

It sounds like you are in the USA. In the U.K. each hospital has a patient rights service called PALS who will help patients and relatives to complain about care. Try to find out if there is something similar in the hospital where your mum is.

[Livinglifeachday in reply to Rhyl1]

Thankfully I have had the incredible support from my partner since day 1, he has helped me find the strength and courage even when I was at the lowest points.

I have been doing some research on how I can help my mother from outside or where I can file a complaint. because not only are doctors not making an effort to wean my mother off the vent, but they are also not properly caring for my mother. FRom the research I have done, this particular hospital has a horrible reputation on treating patients, and that is very worrisome. Right after speaking with my family, I decided to call the hospital again and requested to speak with her on shift respiratory therapist because I just could not wrap my head around what the "hospitalist" doctor had told me so bluntly. To my surprise RT was more optimistic about my mother's situation, and advised that they they had not completely stopped weaning, they had just paused efforts because they wanted to get her PEEP and pressure support lower before they continued lowering her fio2. Through out her stay here, I have been getting mixed updates. I have now requested a meeting with her team (pulmonologist, hospitalist, PT/OT, RT, and Nurse case manager) I need concrete answers!

[Sepsur]

Hi @Livinglifeachday

That is devastating news - you can’t carry that by yourself - @Rhyl1 ‘s advice to confide in another person ( maybe your closest friend at first) is a good idea - they may offer an level of objectivity that you need at present & help you to tell the rest of your family. I hope that by some miracle things improve for you all.

betteroptionsventilators.co...

[Livinglifeachday in reply to Sepsur]

yes, I hope that by some miracle, things take a turn for the best. After a day of just taking it all in and calming myself I found the courage to tell the rest of my family and let them know what was happening.

[Color27]

Wow, I was reading your post and thought I could’ve written this. Going through the same exact thing. I received a call from the LTAC and said they will discharge my mom to a congregate home today. I told them as of yesterday the nurse practitioner told me they are still trying to wean her off her vent. And I don’t understand how her oxygen requirement is more compared to the hospital when I thought their goal was to wean her off. I requested to speak with the doctor and I was basically told, they can request but they don’t guarantee he will call me. So I called the respiratory therapist to see what the doctor ordered in terms of weaning her off and she said they don’t have any order to wean her off and basically categorized her as chronic ventilator dependent. No one updates me unless I call. It is very frustrating.

I am still holding on the the hope that she can still be taken off the ventilator. They said my mom will never wake up and willl never move but she proved them wrong. From what I was told subacute facilities can still wean patients off the ventilator. That’s why I’m fighting for my mom to go to a subacute rather than a congregate home.

[Livinglifeachday in reply to Color27]

I completely understand your frustration. Same thing happens to me, I do not get updates on major changes, unless I constantly call until I get a live person to answer the phone. As of now, I have been getting mixed updates on my mother progress, and so I have requested to have a meeting with her whole team. If you do not mind me asking, what are your mother's current vent settings? Did she have any prior lung condition? My mother was diagnosed with mild pulmonary fibrosis prior to covid and the virus did so much damage that her lungs are stiff and her chest x-rays don't really show improvement. At this point I think my mother is best off at a subacute facility instead of where she currently is. From What I have been told is that in subacute facilities their focus is more rigorous PT/OT as well as continued weaning efforts. I truly hope that both of our mothers can be taken off the ventilator and are able to return home once again.

[Color27 in reply to Livinglifeachday]

She’s currently on FiO2 60% with PEEP of 5. When she was in the hospital ICU 3 weeks ago they were able to bring that down to 35% so she’s gotten worst at this facility. She did not have any prior lung condition but because she’s 76 years old, I feel like the have given up on her. Also because she’s been in LTAC for 21 days (max reimbursement) and she doesn’t have the best insurance, they are really pushing for her to transfer to a “cheaper” board and care facility for ventilated patients to live out the rest of her life. It’s all about the money and it’s very sad. It has been really hard but I will continue to fight for her. Praying that our moms can be taken off the ventilator 🙏🏻

[Livinglifeachday in reply to Color27]

OMG it really is like our mothers are going through the exact same nightmare at these facilities. When My mom was initially discharged from the ICU into the rehab hospital, they had managed to lower her FiO2 down to 35% with a PEEP and Pressure Support of 5. Within 36 hours of being admitted to the rehab hospital her CO2 levels had spiked from 35ish to 120!!!!! Was rushed to a different emergency room where they had not history of my mothers records and was placed on FiO2 80% PEEP of 12 and Pressure support of 15. They have managed to lower those numbers a little down to 40-45% FiO2 PEEP 7 but it is very concerning. All the progress that was previously made was lost within hours. Thank you for sharing. Do not give up, we are our mothers only advocates and we we must fight for them so they can come home. Sending hugs and strength to you and your family.

[Ajd7225]

Hello today is day 135 that my mom has been dealing with the lasting effects of covid. She didn’t wean of the vent until day 77 and some doctors even said she was unweanable . She’s still in a nursing home / rehab and unable to move or speak the doctors are saying she had a brain injury which caused her to loose some brain cells. They are saying this maybe her new state so I have started the paperwork to bring her home bc it’s bull. When she was in the hospital the therapist had sooo much hope and felt my mom needs more time but the rehab is saying she isn’t responding. Therefore when she comes home I plan to watch YouTube and do therapy and pay a therapist here and there. Medical since may run out of options but God has the final say. Continue to trust God our moms are coming back to us refreshed, restored, and renewed. Sending hugs and love .

[Livinglifeachday in reply to Ajd7225]

yes keep fighting for your mom, I'm glad she was able to wean off the ventilator. Doctors have told us that it looks like my mother might be unweanable, but then again we hear different thigs all the time. I have faith that she will get off the vent. When doctors initially started decreasing paralytic medication, it took my mother almost 2 weeks to wake up. Doctors thought that she might of had a stoke and that it could be likely that's why she was not waking up, but she proved them wrong! We were lucky enough to visit her during the time she was at the first hospital so we helped her a lot with PT along with the therapists, she made huge progress there. Unfortunately I cannot say the same from the current facility she is in. My mother only speaks and understands Spanish so I fell like staff cannot communicate well with her and because she cannot understand what they are asking, she is not following commands and therefore PT think she cannot move. It is very frustrating. I hope everything works out for you and your mother and she is able to go home soon. I truly believe that having the care from family at home is what will continue to motivate them and push them to get stronger. Sending you hugs and lots of strength as well.