From Vent to Diaphragmatic Pacing System (DPS)...

[One-of-a-kind]

Hi all,

It's been a while...so here's the update. We were getting very frustrated as the bivona didn't seem to work...couldn't get the cuff down, high pressures etc. Finally figured out he needed a custom trach. We're now on custom trach 2 and it is a world of difference!! Finally we're able to get the cuff down, ventilate effectively and he can TALK!! Not great quite soft most times but still we had a conversation. Vent is set at 1200 volume, rate 11 - breaths at 18, peep 5 (stronger voice), sensitivity 2 (1 goes too high rate wise) Now questions for you all...

1. Have had the cuff down for 2 hours and he is really tired (not sure if its anxiety or fatigue). Was that your experience as well? How long did it take for you to get used to having it down? We're not using the passey-muir valve (PMV) yet.

2. We have a talking trach (which can blow oxygen above the cuff)...anyone have experience with them? I'm using it largely to blow air before we take the cuff down by a few hours to dry up the secretions.

3. We are using glycopyrrlate to dry up secretions and have them down to a 100cc a day or less. When we use the talking port we can dry them up to 35 or so. Anyone else have secretion issues. Sometimes he just foams at the mouth...he really hates it and doesn't want anyone to see him like this. Will the PMV help?

4. Has anyone else needed a custom trach here? I can't believe the difference.

5. Dad's quite exhausted or down and I'm not sure which...how taxing is all this on someone? Dad is 71 and has been through A LOT so I'm not sure how fast to move things along...any thoughts?

Thanks all...looking forward to hearing more from you all.

Tracey

ps botox may have been a bit helpful in secretions too, but time will tell. Certainly worth something to explore.

[LindaT]

Hi Tracey, I often wondered how things were going for you and your father.
That is wonderful your dad is able to speak. I totally understand what it is like to hear that voice even if it is different and weak after so long.
The respiratory issues take a lot out of my husband and he is often fatigued also.
Your dad has been through a lot, and like you said he is not young.
I'm afraid I can't really answer your questions. I'm not really sure what a custom trach is.
My husband is only on the vent about 12 hours a day and uses the passey muir valve when off of vent-when he has enough ooomph to tolerate it.
Good luck and keep us posted.

[One-of-a-kind]

Hi Linda,

Thanks! A custom trach is one which is actually designed specifically for the user's size and airway. We'll keep moving ahead. Have you thought of using a talking port when your husband is tired? You need an air or oxygen source but turn it on and it provides air to the vocal cords enabling speech.

Tracey

[One-of-a-kind]

Anyone else? How long did it take you tolerate the cuff down? He finally vents well with the new trach, but I'm curious about your experience.

[Scaper1]

I can't recall that the cuff had any effect on my energy levels. Do you monitor your dad's oxygen saturation levels? It might be worthwhile to see if they do actually drop or if he's just feeling anxious.

[One-of-a-kind]

Great question...he's monitored with an oximeter and he actually did better with the cuff down. I'm just waiting for my machine to arrive to monitor his CO2 levels just to make sure those are okay. He still has some secretions foaming in the mouth though way well and I know he is working on trying to swallow although in his words...they told me I'd choke if I tried that, so a bit anxiety provoking. He's still managing okay. Scaper How long did it take for you to tolerate a full day of the cuff down or was it pretty much done right in one step?

[Scaper1]

I'm fuzzy on the details, but as far as I recall the only reason that I was initially cuffed was out of concern that I wouldn't be able to swallow food and drink without aspirating. As soon as it was determined that my swallow mechanisms had been spared, they replaced the cuffed trach with a cuffless plastic one, and soon thereafter they switched the plastic to a stainless steel model.

Secretions in the mouth are gross, yes, but actually kind of good in that they're coughed (gagged) up without the need for invasive suction. Any foreign object in one's throat is bound to cause irritation and the creation of secretions (especially in certain positions), so whatever you can get out with a mouth suction is a bonus. I assume you have the mouth yaunkers? Just keep clearing them out that way. Other things that may lessen the irritation to your dad's trach are using the foam and velcro trach holders (like Dale) and ditching those slit gauzes they use in hospital. The latter and their insertion are a needless pain, imo. Just keep the stoma clean with sterile Q-tips and some kind of cleaner. I've been using Vetericyn.

In case I haven't actually said so, your dad is really lucky to have you.

[One-of-a-kind]

Thanks Scaper! Hadn't thought about ditching the gauze but might try that. Also going to go to a tight-to-shaft cuff, which is like a cuffless trach when the cuff is down. Great advise! Thanks! Swallowing is a concern, but he seems to be able to better manage his secretions than before so hope that's all good news.

I really appreciate this forum... makes a world of difference. By the way we've sort of held off advancing his pacer trials - doing only 30 minutes once a day just to keep things going. However, he is now able to lie absolutely flat and on 3.5 - 4 L of oxygen he can go 30 minutes with sats 91 -93, which is great compared to where we started! I also had the pacer off for 3 minutes and he did the same. So if we can only get his cuff down we'll be mostly there...keep the advice coming!!!

[trainman]

I use a split 2x2 IV sponge for my trach. It works well in absorbing any drainage I have during the day, but is small and neat.

[LindaT]

I use a split 2x2 IV sponge for my trach. It works well in absorbing any drainage I have during the day, but is small and neat.

That is a really good idea. The 4X4 can get sort of floppy.
Some days he needs the larger one if extra secretions.
We use the 2x2 for the SP.

[One-of-a-kind]

Anyone heard from Bill lately? He normal has great wisdom to share on these things and I haven't heard from him in a while.

[trainman]

I hear from him regularly. As he said a few posts back, the DPS didn't work for him. So he may not be monitoring this very much.

[LindaT]

I hear from him regularly. As he said a few posts back, the DPS didn't work for him. So he may not be monitoring this very much.

Oh, that is too bad. Tell him hello.
When I am using the cough assist I sometimes wish he were in the room so I could ask him questions.

[One-of-a-kind]

Good point Trainman.

[nancygail]

Bill

Bill was so helpful to me during my early days on the vent.I do miss his words of wisdom.

Fortunately ,I'm doing great.I've been evaluated for the DPS.MD said i'm an excellent candidate.Just waiting on scheduling.