After 3 days of being off ventilator, my mother has started speech therapy. Today the therapists did an evaluation on my mom and attached a passy muir valve (PMV). My mom's voice is very strong, we all think because of the persistent cough she's had. When the therapist first placed the PVM, mom felt good, but after a while she said she felt like she was not getting enough oxygen and started to feel a tight chest, and even started to sweat. She suffers from severe anxiety and these are usually some of the symptoms she gets when she's getting anxious, so I'm not sure if what she felt was just her anxiety since she was saturating between a 95-96% during the 30 minutes she had the PMV.
Since this was her first time, is it normal for her to feel this way? Is it all part of the process? Therapist said they would try again tomorrow and hopefully they could also start the swallowing tests.
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The strong cough contributed to saving my life - according to nurses - kept even coughing my PMV across the room - unlike your Mom - my voice was as soft as a kitten
From what I saw from the face time call, my mom seemed a little nervous when they placed the PMV, she was afraid to cough at first because she felt like the piece would fly out and no one would be in the room to help her. the Speech therapist was very surprised at how clear and strong my mom's voice was. I'm hopeful that with time she will be able to tolerate the PMV for longer periods of time.
My husband needed to slowly build up his strength with his speech valve. At the time I never noticed if his sats were changing but I know he got worn out really quickly. It was when he caught covid that I noticed that the more he talked, the lower his sats went. The staff told me that when you are talking or concentrating on a activity you might not breathe as deeply and therefore your sats can decrease.
I know my husband also used to get a bit anxious when his speech valve was fitted as sometimes it could take a little while to fit it into the circuit which he had been disconnected from and he got panicky without the oxygen supply. Hopefully your mum's therapists and nurses will be a bit better at fitting her valve 🙂
Maybe that's what it was. She did mention to me that when they initially placed the valve she felt fine. It wasn't until she coughed, took off the valve to suctioned her, and place it back on that she felt like it didn't feel right, like it wasn't connected right. I will try to make sure that they do a proper fitting when they come in today.
My mom's biggest worry is that if she can't tolerate the valve, doctors will decide to stop giving her speech therapy.
I hope things have been better since your last post. I think the speech valve really takes some getting used to. I think it is a whole different way of speaking so I'm sure she will get there.
My husband didn't have any speech therapy, although the speech therapists did do swallow tests with him. They assessed him a little while before he was discharged and felt he was OK. I hope your mum doesn't worry too much about the speech therapy stopping as she needs to do it at her own pace rather than feeling rushed and pressured. My husband's progress was purely through a bit of time with the speech valve each day, gradually building up the time he spent on it.
Things have definitely gotten better. Mom received speech therapy this morning and the therapist did a swallow test with blue dyed ice chips. She did great, no signs of aspiration and mom was happy because she was able to have some water after soo many months!
Since being disconnected from the ventilator on Sunday, her oxygen (Fio2) needs have gone from 40% to 28% and today she was able to tolerate a little over 4 hours with the PMV, and that is only because she wanted to go to sleep (therapist told her she could not go to sleep with it on, and to notify them so they could take it off) Otherwise she would have gone longer, she felt much better than the first time around, and her voice sounds completely normal.
How much time did your husband have to build up his tolerance with the valve before they decided to red cap him? When I asked the speech therapist she said 24 hours, but she had to take it off while sleeping, mainly at night. So how do they determine 24 hours? Then she said, maybe just having her tolerate it during working hours (9am-5pm, I assume) she was not very clear...
That's brilliant news. I remember my husband's first cup of tea! 🙂
I'm not 100% sure about the exact steps to him being completely weaned off as it happened when visiting stopped and as covid was on the increase, it was harder for me to be able to speak to staff members for information. From when he started weaning properly, it took 28 days to having the tracheostomy removed (he had been on the ventilator for about 2 months before they started weaning properly)
My husband would have time on what they called 'vapotherm' which I think was warmed oxygen - this was done alongside time with the speech valve. The weaning process seemed a bit hit and miss and I remember them saying the same to me about 24 hours completely off the ventilator before being able to stay off it for good. They said that once he had done 12 hours without any issues, they would then try over night (having had a rest from it in the day), then try 24 hours.
He gradually built up his time and then all of a sudden he seemed to go from 4 hours to a whole 36 hours in one jump! This coincided with him moving out of ICU and down to a high dependency unit so I wonder if different staff just felt that they would test him and found out that he could manage. Before I knew it, his tracheostomy had been removed (the next day) and he was just using nasal oxygen and speaking (fairly) normally.
Sorry for such a long post. I'm so glad that your mum is doing so well and I think now that her confidence has built up with the speech valve she will continue to push herself each day 🙂
It could be a bit of both. I don't have any hard and fast answers because my mom is still in the midst of a weaning protocol from/with a trach and is using a speaking valve only during set "therapy times" and I haven't actually gotten to speak to her while it was on.
However from what I have read the way the valve works can make breathing 'feel' different and could make someone anxious about not getting enough breath. My mom had breathing anxiety prior to going into the hospital (not COVID related, but she has COPD) so sometimes part of the time with the speaking valve is just getting her to calm her breathing and not panic/hyperventilate.
Good to hear that your mom is weaning and on the path to recovery!
I was able to be on a FT call with her during her speech therapy, and I was trying to calm her down as much as I could. It did make her feel a little better knowing that I was there, but she was still a little anxious and that could have caused her to feel like she could not breath after a while.
My mom is on 2 different types of anxiety meds around the clock because of how severe it has gotten. I'm constantly having to call the hospital and talk to her shift nurses so they are aware that my mom needs to receive her meds on time if not her anxiety goes out of control. Nurses that take care of her for the first time are oftentimes not aware of her anxiety and don't necessarily give her her meds when she needs them. I think that as long as her anxiety is under control she will be fine.
I can’t remember exactly when I had the valve. I was only allowed it initially for short periods. It was very exhausting using it and frustrating afterwards when I lost my voice. They tried 3 different voices. I think at one stage that they thought I would have to use one for the rest of my life which didn’t really bother me as I knew a had a voice.
I too had ice chips for exercises which were hard but such a treat as I was nil by mouth and had swallow issues. In fact I didn’t move on to “food” slop until my last day in hospital.
When they took the trachy out it took 3 weeks, or so may have been longer, for the wound to heal. I had to place my fingers on my dressing when speaking and I could never find the right point to put my finger so the stuck an ecg nipple on the dressing to I could find it.
When I had the valve I could tease the nurses and with a good cough I could project it across the room 🤭😂
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