Trach question

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Larrytbm

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102
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Lost a loved one
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05/2017
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Austin
Today, the pulmonary Dr suggested we begin considering to trach or not. Since I'm so ignorant on this it is ez for me to ask dumb questions. Can a trach be shut off and a mask used for breathing for say an hour or so? Even 15 min? If so, I wouldn't need backup help while I walk the dog or sweep the porch, etc. We live in a rural area and getting help for multiple short times per day won't work. Please educate me.
 
Why would you need to shut off the mask for those tasks? The ventilator is every bit as portable as a bipap.
 
Larry if you use the search function here you will find lots and lots of discussion on the trach from all sides of the equation.

Diane's site alsfrombothsides also has a lot of information.

I recommend you do all this research with your CALS and be sure you both understand all the pros and cons and ups and downs. You will get a few hours of reading, and then of course it can be discussed more here as well. Making a really informed decision is likely to give you the smoothest transition if you choose a trach.

You can possibly have a trach and breathe without the ventilator, it will depend on how well you are breathing. Some PALS have a trach put in because of secretion issues before they need to use the vent all the time. However as inventor says the vent is portable too.
 
My question is can the vent be used with a face mask instead of thru the trach after it is placed? My limited understanding is the risk of a mucus plug while using the trach is high. So, if my PALS was alone for 15 min, would the mask be an alternative?

I have done some reading but haven't seen the above question. And I know there is a lot more to consider for both of us.
 
I would think that bypassing the throat and vocal chords would reduce rather than increase the mucus risk.
 
I don't think you can use a mask in place of the vent. The settings are completely different. I'm getting trached on Monday the 8th.
Patrick
 
We never did this but I think it could technically be done. There are " caps" that can be put on the trach, the cuff would need to be deflated, and the Respionics Trilogy can be programmed with 2 settings, one could be set for full ventilation through the trach and the other for bipap through the mask. The key question is how long your PALS's respiritory strength could tolerate the bipap before she starts desating ( oxygen dropping) and this would most likely decline over time. In making the decision to trach I think one should be prepared that the PALS can never be left alone. My husband was home on a vent for 4 years. I understand how difficult a decision this is.
 
I would think that you would not use a mask once you have a trach - good question to ask your respiratory doctor while considering this.

The difficulties associated with changing are maybe not worth it. So I agree that you need to consider that if you go on a vent, you will need 24 hour supervision.

Please let us know what your doctors say about it, as it's quite a question!
 
Kate is right -- doable from a technical standpoint, for example, if your PALS had a trach today, since clearly she(?)can still breathe with noninvasive support. But we have no way to know the ability to breathe without the trach for any given period on any given day, in the future. It is not having the trach that is the problem, it is the continued decline of respiratory function.

How much is she using the BiPAP now -- what was the catalyst for the pulmo talking about the trach?
 
Kate is right -- doable from a technical standpoint, for example, if your PALS had a trach today, since clearly she(?)can still breathe with noninvasive support. But we have no way to know the ability to breathe without the trach for any given period on any given day, in the future. It is not having the trach that is the problem, it is the continued decline of respiratory function.

How much is she using the BiPAP now -- what was the catalyst for the pulmo talking about the trach?

The DR was just wanting us to have the time to think thru the decision. She is using the BiPAP about 18-22 hrs per day. But the respiratory therapist made some adjustments yesterday, first time in several months. So we will see how she does now while looking at what to do next.
 
Larry a mucous plug can form, with or without using the trach. As long as you are in ear shot of your PALS, you could still sweep the porch, however leaving ear shot is not advised. The vent will alarm if there is a problem, so using a baby monitor while out of the room does help with chores. However going to the store with her at home is not an option if she definitely needs the vent to breathe.

As stated above the vent is quite portable. Until Brian got to his current state (he is 7 plus years vented) he would still go to the store occasionally, went for “walks” around the block. The vent nicely on the back of his wheelchair. You just have to also take the suction machine with you. One day he actually took off in his chair while DS and I were spreading mulch. Imagine my panic when I could not find him. What if the tube popped off, which can happen, and probably a bigger concern than a mucous plug. I finally found him after scouring the neighborhood, he was up talking with our neighbors, he a physician and she a nurse. He could not have been in a better place. And the vent has batteries, the trilogy in and out so about 6 hours coverage. But they still need another person with them unless they can self suction or replace the tube on the trach themselves.

I really wish you lived closer as I would invite you to our home so that you could see the vent being used in person. I would walk you through everything that needs doing. I’m more than happy to have any PALS OR CALS come to our home to learn about the vent. Brian is also very supportive of having someone come and learn. We did have a local CALS come, his PALS refused, she thought it would be to scary. She has a diaphragmatic pacer. However, if flying here from TX is an option you are still welcome.

Hugs,

Sue
 
It is kinda weird that as long as I was ventilated through mask, it was OK for my wife to leave me alone for 40 minutes when she took little Svea to kindergarten. Now that the vent is in the trache and I am no longer constantly at the risk of choking, it is no longer permissible to leave me alone for any longer than the nurses' cigarrette breaks. And even then they have the phone with them so I can skype them if the hose pops off.
 
It is kinda weird that as long as I was ventilated through mask, it was OK for my wife to leave me alone for 40 minutes when she took little Svea to kindergarten. Now that the vent is in the trache and I am no longer constantly at the risk of choking, it is no longer permissible to leave me alone for any longer than the nurses' cigarrette breaks. And even then they have the phone with them so I can skype them if the hose pops off.

I think the difference for us is that today my PALS can use the cough assist and suction equipment by herself, when she needs it. So, I don't need to be home to help her. With a trach, that will be my task based on her letting me know.
 
At home, I'm sure that I can arrange backup caregivers. However, I believe the insurmountable issue is that we will have to give up our volunteer work that we have done for 17 years. Of course, this will happen with or w/o a trach at some point, but in getting a trach that point will be now.

We live in our RV for at least 3 weeks at each job, the men doing construction and the women sewing. Sewing one of my wife's biggest joys. While it is coming to an end, the socialization with other women is still a great joy and being able to split up various tasks would extend her sewing time vs. being at home, alone and having to do every function herself. But, I can't take a backup caregiver with us. Nor can I train one of the other ladies on the fly to be a caregiver and get up at 7 am, leave her RV, while I go and work with the men.

I feel like it is a catch 22, the trach would mean better breathing and ability to do things, yet it also means not being able to do the one activity that would give her the most joy. And it isn't just about sewing , but being around friends we have known for many years who live scattered many miles apart.
 
Larry, as long as she has the mobility to do so, she could suction herself. I’ve known of PALS that do, so while you need trained, she could still suction herself even with the trach.

As to travel, as long as her mobility permits, you can travel. It takes a bit more forethought. And at least for us, mucous plugs don’t occur all that often, they’re actually very rare. While he may need suctioned, most times it’s loose and comes out easily. Days vary. The vent is very portable.

Also there is no reason she could still not sew as long as she has the mobility.

Adding a vent does not confine her to bed or wheelchair unless she already is. It also does not confine her to home.

It does bring a whole new set of things to worry about/care for, but many people go to work etc. Anyone can be trained to put a tube back on, and truly anyone can be trained to suction. Our daughter learned at 16 when Brian was vented. I could have taught her much younger. I’ve trained many people, even though most are not around to actually help. If one or two of the women were willing to learn, they could be easily taught.

That said, I also wanted to remind you to check with your local hospices. Here where I live, they won’t take on a patient on a vent, unless it’s to do a death wean. Everywhere is different though. I mention this because at some point you may definitely need the help.

I’m not trying to convince you one way or the other, I’m just trying to remove thoughts that may not be true or alíviate worries that can be unfounded in reality. Most is based upon her current abilities that over time will change, but it doesn’t mean they change immediately upon being trached.

After being trached, he attended outdoor rugby games, and indoor concerts, went to church weekly and anywhere we could get his power chair. We carried a portable ramp with us for times when we’d encounter a step or two. She will only be as confined as she chooses to be until she loses more abilities.

All that said, do I struggle as a caregiver, yes I do. However not long ago I asked Brian “knowing what you know now, would you still choose to trach?” His answer was yes. Someone else might say no. I’m not sure I could personally do it, and would probably choose against it for myself.

And there in is the biggest question, what does your wife want? That is the most important question and trumps anything I or anyone else has said. It has to be her choice. If her choice is yes, then you need to be totally on board as well because it is a huge commitment on your part.

I wish you all the best as you consider your options

Hugs,

Sue
 
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