Ventilator Update - RT Wants to Change Mode

I think waiting a day was a good idea. It gave me a chance to regroup. I spoke to my DME and we agreed that I should call the Respiratory Therapist helping us out and discuss the situation in detail. I had a lengthy conversation with him this evening.

I relayed to him how things have been going and how I am waking up almost every hour every night now. When I woke up last night around 12:30, I checked the ventilator and sure enough -- the pressure was up to 21. He said that the Trilogy lowers the pressure by 1cm per minute, so it takes a fairly long time to get from 23 (or 21) back down to 14.

He said that based on what I told him today, he thinks we need to re-evaluate the therapy needs and has made a suggestion that we are going to put to my doctor for her approval.

He wants to change me to SIMV Mode -- Synchronized Intermittent Mandatory Ventilation. He said we would set a tidal volume of 400 (which is what I'm at now). I will also have Pressure Support with this mode, at my standard bipap settings of 14/6. I don't have all the specifics right now, but will once he emails them to me to forward to my doctor.

He said that I can't keep going on being woken up so much because the pressure is getting so high, so this is his recommendation. In the interim, he said I COULD turn the ventilator off and back on, quickly, until we get something else figured out and approved by my doctor.

He said my case is extremely complicated, but if I was his wife, this is what he would do with her if she was in my situation. I'm really glad I called.

Glad to hear you have a game plan in place. I hope it works out.

msradar65 wrote:Glad to hear you have a game plan in place. I hope it works out.

Thank you. Obviously I need to get the written recommendations from the RT, then forward it onto my doctor. She has the final say, but at least we're trying to accomplish something.

Well, the Respiratory Therapist emailed me the specifications at 9:20, so I have compiled them and sent them off to my doctor. Now all I have to do is wait to hear from her.

Gotta love an RT that will help you at 9:30 at night.

Sounds as if you have someone who is called to his profession. Someone that does it at 9:30 does it because they care about others.

Glad you were able to tackle this after some rest. Calmly, though gently forceful. That's the way to help others to see the big picture. Good for you.

Here's hoping this leads to better sleep for you. We'll be thinking of you.

JohnBFisher wrote:Sounds as if you have someone who is called to his profession. Someone that does it at 9:30 does it because they care about others.

Glad you were able to tackle this after some rest. Calmly, though gently forceful. That's the way to help others to see the big picture. Good for you.

Here's hoping this leads to better sleep for you. We'll be thinking of you.

Thanks John. The phone call with him took place at 5pm, which also impressed me. Having him draft the email and send it at almost 9:30 at night - this guy's a keeper. Too bad he's only helping out for now, but I'll take it.

In his email to me, he strongly recommended that if my doctor approves the new settings, I "give them a ride during daylight hours before trying to sleep on them" which is something my old RT never said. I like his way of thinking. He was also very complimentary towards me about my awareness of my situation and the knowledge I have gained about my condition and the therapy I'm getting. Thanks to the good folks here for that.

I decided to turn off the screen saver last night so that I could easily check each time I woke up to see what was going on. If I woke up 10 times last night, 7 of them had increased pressure to at least 17-18. The leak rate was fine each time I woke up, so that's not a part of the equation, which is something I know people have asked.

According to the RT (who has worked extensively with the Trilogy), it takes one full minute per cm to reduce the pressure once it recognizes it can lower it. So when it was hitting 23 for me, it would take 9 minutes for it to reduce back down to my IPAP minimum of 14. No wonder I was miserable.

Now all I have to do is wait to hear from my doctor.