Mother has been on vent for 111 days now, how much longer?

[Livinglifeachday]

Hello everyone, although I have been following this page for a couple of months now, it is my first time posting. I have found great help and support from this page! Can anyone help with concerns and questions I have? My mother tested positive to covid-19 July 24th and was immediately intubated the following day. Worst day of our lives as we did not know whether she would make it out of this. She was in such a bad state that she had to paralyzed for about 30 days to keep her alive, Fio2 levels reaching 100% at times (thankfully none of her organs failed). After finally testing negative for covid, doctors decided to place a trach since she would most likely need to be on vent for a longer period and to start reducing sedation (took my mom 11 days to fully wake up). During this period, we found out that my mother had a preexisting condition (pulmonary fibroisis) and on top of that the damage covid had done to her lungs. Doctors have warned us that my mother has very stiff lungs and that it might be very hard for her to come off vent. She has been on vent for 111 days now and it has been a roller-coaster of emotions for my family and I. She was at the ICU for about 76 days before they transferred her to a rehab facility where they specialize in weanling patients off vents. She had already made so much progress at the hospital she had been at (started PT,/OT, speech therapy-hearing her voice for the first time bas such a blessing, had been on trach collar for 24 hrs down to almost 3L, and started swallow tests) and Fio2 had gone down all the way to 35%-40%. When she was transferred she did not even last 2 days at this rehab facility before she had to be transferred back to the ER because her Co2 levels had skyrocketed. After a week at the ICU, she was transferred back to the rehab facility. She has been back there since October 15th and I have not seen major changes in her condition. Her Fio2 levels have been at a constant 40-45%, has not been on trach collar at all, had speech therapy, and pt/ot is very minimal, nothing compared to therapy she had been receiving at previous hospital. She is still very weak and cannot stand. My worry now is that she might not be able to come off the ventilator since her lungs still show a lot of stiffness. Has anyone that had covid and was ventilated, experience along weaning process? If so how long? My mom is going on 4 months and doctors have not been successful at weaning her below 40%. I just don't know what to do or how to help my mom. Could it be that her lungs just need more time? Next step would be to send her to a lower level care subacute facility since they do not recommend she get discharged home yet, she does need a lot of ventilator care. We all want mom to come home already and we know she wants to be home as well. All this has been so hard... Sorry for the long post.

[Sepsur]

Welcome @livinglifeachday That is an unimaginable longtime to be vented. I’m sorry I can’t answer your question in ref. to Covid but I did take a long time to stabilise properly- on and off - different ventilation, I was incredibly weak but I needed regular physio otherwise I know I would never have got moving again.

[Livinglifeachday in reply to Sepsur]

Hi thank you for replying! I'm glad you were able to come of the vent! After my mom tested negative for covid, they did authorize visitation for my father, siblings, and I. I feel that really helped her in her recovery. She was weaning off vent and I was always there during her PT sessions, motivating her and I saw the progress she made in the month I was allowed to visit. But now that she is in a rehab center I am not able to see what kind of therapy she is receiving and how well she is doing. When I ask for updates they are very vague and I'm not necessarily getting the answers I need.

[Sepsur in reply to Livinglifeachday]

That must be incredibly frustrating for you. Can you video call your Mom at all? I know how important my wife’s daily encouragement was for me motivating myself to do physio. What I found was that the staff in the hospital were constantly under pressure with their time - so it was important that I was a willing participant - otherwise they quickly moved on to the next patient,

It’s really difficult to explain the physical, mental & emotional energy required to rehabilitate - chronic, chronic, chronic fatigue - without my family bolstering me and telling me I could do it....who knows?

Would I have had the mental strength to drag myself back?

I hope you manage to get some more attention for your Mom

[Rhyl1 Partner Moderator ICUsteps]

In patients in specialist weaning units normally have lots of input from physiotherapy and occupational therapy as well as a clear plan for coming off the ventilator. From your description none of this seems to be happening and if this was my mum I would want to speak to the consultant in charge of the unit to understand what they are doing and what the long term plan is.

[Livinglifeachday in reply to Rhyl1]

Hi, when my mom was at the initial hospital, I was very involved with everything surrounding her care. Every single day I was getting updates from doctors and they would ask for my input on how they could better assist my mom as well. In the current facility she is in, we were initially told that their main focus is aggressive weaning of vent and intense PT/OT and speech. After a few weeks of no progress in weaning and not much progress physically I spoke with her nurse case manager and addressed my concerns. I was then told that the PT/OT was an added service and that my mom would be receiving more intense therapy once she was transferred to a lower level care facility. When I was able to see my mom, I made sure to constantly work with her legs, arms, and even after PT. Now it seems like she is laying down in bed all day with the exception of the 10-15 minute PT sessions she gets every other day...

[Dbilingual79]

I am so sorry you are going through this. It does seem like a very long time to be on the vent but you should definitely demand a plan of action for her. I don't know where you live but my dad had to go to an LTAC (long term acute care) facility where they helped wean him off of trach. He actually did not come off until he went to the Rehab facility. I would request a meeting with her team of doctors to see what the next best step is for your mom. I will add her to my prayer list. Hang in there!!

[Livinglifeachday in reply to Dbilingual79]

Hi, thank you, my mom needs all the prayers right now. How long was your father on a vent if you don't mind me asking? I live in CA, in the bay area. I have tried to get a hold of her main doctor but its so hard to even get a hold of anyone to answer the phones at times! When I ask what the plan is, they tend to say "to continue weaning her off the vent". I feel like I have been cut off and don't know what is going on at times. I just wish I was allowed to go in to help my mom with anything she needs. I know that would make a HUGE difference in her recovery process.

[Dbilingual79]

My dad was put on the vent on April 4th (we are in NY) and then on April 17th he had the tracheostomy done because he just couldn't wean off the vent on his own with the tube down his throat. He stayed on ventilator thru the trach site until April 30th and then high flow oxygen through all of May and into early June. His rehab facility finally got him off of oxygen and removed the trach tube on June 25th. Are they not allowing you to go into the hospital?? I would think now they have been allowing visitors? I would go above the doctors then to the administration / executive office to see what is being done for her and what the plan is long term. You should have answers....not be given the runaround. I am sorry!!