Pneumonia- intubation?

Meldz

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We are currently in the ICU with pneumonia. It's been 2 days, and he's been on the bipap almost continuously. He's had a few hours where he was on high pressure vent, but then had distress and back on the bipap. My husband is adamant about not getting a trach, but we had only slightly talked about ventilation. I heard that it can be very hard that once vented he can come off. My husband was diagnosed 7 months ago, can still walk very short distances, but needs help bathing,eating, toileting, dressing.. almost everything. etc. His disease is avery rapid.He was using bipap only at night. I know the doc is concerned about him becoming bipap dependent. So here's my question. If he is intubated
, if he can't come off , what are his options?is a trach the only option, or being bipap dependent. As I write this, I'm thinking that the worst that would happen is he would be bipap dependent, but if he stays on the bipap he is anyway. Am I thinking correctly?
 

lgelb

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I'm sorry to hear that, Meldz.

If he is doing OK on BiPAP, there is no need to intubate him. Is he? His settings may need adjustment.

Stay away from whoever tried to introduce a high-pressure vent, if BiPAP was doing the job!

I don't understand the "concern" about becoming BiPAP-dependent. It is pretty common that this happens. He may need it all the time, most of the time, but if he needs it, he needs it. Many PALS live a year or more using BiPAP most or all of the time, even 24/7. On the other hand, his need may be reduced after his infection clears. It would not be at all unusual that his need for BiPAP increased with pneumonia!

Granted, it sounds like your husband has rapid progression, so I'm sure this seems sudden and in truth a year may be optimistic. But the point still stands that he should use BiPAP for any moment in the day where it makes him more comfortable. His current situation is a perfect example -- you're trying to stabilize his lung function so as to avoid intubation and worse.

Wearing it more often doesn't worsen anything. In fact, using it as much as needed will not only prolong his life but help him feel more comfortable and in theory reduce respiratory infections such as pneumonia as well since BiPAP at the right settings expands the lungs just enough to get the right amount of air in and out. There are many kinds of masks and hoses and he can improve his setup once he's at home, if there are tweaks to be made. Every minute that he's not on BiPAP but needs to be risks further irreversible damage so you can see why I'm not concerned with using it. The way you put it in the end was correct.

The main thing right now is knocking down the infection so he can go home. Often ~5 days of IV antibiotics are sufficient to knock pneumonia down to being able to work with oral meds at home. Even if not, I would ask if IV antibiotics could be delivered at home via a home health nurse, if he's relatively stable. Hospitals are even more dangerous places these days for PALS, given COVID-19. Ten nursing homes within a few miles of where I am now have COVID patients.

I'm presuming he's on antibiotics -- is he responding to them?

Let us know how we can help, and hang in there!

--Laurie
 

swalker

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I do not know what hi pressure ventilation is, so can't comment on that.

I can say that I use Non Invasive Ventilation (NIV). Obviously, there is no trach involved. The device I use is a Resmed Astral 150 ventilator.

The first time I tried NIV, I used it for about 10 minutes. When they disconnected me, I could not breath, at all! It took several minutes for my diaphragm to start working again. I was sore for about 48 hours and it took about 4 to 5 hours for my diaphragm to start working the way it did before the trial with the ventilator.

As I have used the ventilator more and more, it has become more comfortable. We have substantially modified the settings to suite my needs. We still have work to do on that. I still have difficulty resuming breathing on my own when the ventilator is disconnected, but I have never failed to finally start.

So, I represent at least one data point where using a ventilator periodically does not necessarily mean the ventilator is going to be used 24/7 going forward. I currently use it about 3 hours per day about every 2 to 3 days. It provides dramatic relief, but I cannot use it more until we get the settings adjusted to better meet my needs.

It is great comfort to know that I have the ventilator available to me along with a cough assist.

Steve
 

lgelb

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Steve, you are using the Astral as a BiPAP. "Ventilator" is just terminology to signify that it can run off a battery, has higher top pressures than standard BiPAP, and can be used with a trach.

Likely the OP's husband has exactly what you have, just a different model (the Trilogy, typically). It's the same type of machine.
 

Nikki J

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I think your question is not so much about using a machine 24/7 but about being intubated? if intubation is currently under discussion because he needs it to handle secretions or whatever you are concerned that he will not be able to have the tube removed and will require a trach?

if someone needs to stay intubated as a long term thing then yes a trach is needed However if the pneumonia resolves, his secretions are not unmanageable and he is better from pneumonia they could take out the tube and he would use the bipap however much needed up to 24/7
 

Meldz

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They haven't said anything about secretions. The hospital he is in has stayed in touch with his ALS doc, and she would like to see him get off of the bipap. At this hospital, they tell me he can only be on the bipap 4 days. They obviously don't know that ALS patients use it all the time. His BMP has improved from 47 all day long yesterday to I the 20's, but when They reduce the oxygen, his saturation goes down below 90. He's currently at 60% oxygen. They want to him to go down to 40% and hold at at least 92 saturation level before they take him off the bipap. And because he had a cold they are putting us in semi isolation because of COVID 19, even though the onky place weve been is to his ALS clinic. At least the gowns are a pretty blue!
 

Meldz

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I think your question is not so much about using a machine 24/7 but about being intubated? if intubation is currently under discussion because he needs it to handle secretions or whatever you are concerned that he will not be able to have the tube removed and will require a trach?

if someone needs to stay intubated as a long term thing then yes a trach is needed However if the pneumonia resolves, his secretions are not unmanageable and he is better from pneumonia they could take out the tube and he would use the bipap however much needed up to 24/7
Let me see if I understand, so if he is intubated for a long time, which is how long? His only option would be a trach?
 

Nikki J

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The standard I am familiar with is 7 days. However my father (who did not have ALS) was intubated for 2 weeks and then was extubated without issue. The reason for the limit is the pressure of the temporary tube can cause dmage to the underlying tissues. It is also not uncommon for people to get trachs that they eventually don’t need and the area heals. However , these are usually not people with ALS but rather those who have something from which they recover.

can you speak with the als doctor and get clarity about what they issues are
 

Meldz

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At the hospital, they've told me he can only be on the bipap 4 days, which I know is incorrect since many PALS live o it 24/7. I over hear the staff telling each other things, but not me. I feel like I'm being left out of the loop. Its a little frustrating. I had to have an argument with the oncall doc last night because someone didnt chart that the medication they had given him to bring down his BPM worked. He finally relented and gave it to him. His BMP is much better and has stayed that way. I keep telling them to keep me informed and talk to me Bout it.
 

lgelb

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He is your husband. He is the patient. You don't have to allow them to remove the BiPAP if there is no reason that they can explain and show you. A four-day limit is not, as you have said, a reason.

As Nikki said, try to get other doctors involved.
 

KateEmerson

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I had to use the HIPAA card a few times with my husband ( PALS). Under HIPAA the patient has 1) The right to make a treatment choice 2) The right to informed consent 3) The right to refuse a treatment. I found if I specifically said " under HIPAA , he has the right to... pick one of the above" they immediately fell in line.
 

Tkthiede

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I'm sorry your husband is having a rough go. I'm guessing you are in a decent sized hospital. If you don't think you are being heard or kept in the loop, there are usually patient advocates or representatives that you can talk to. That's their main purpose. Ask the nursing staff to contact one for your husband and you to talk to. It may help.
Tammy
 

notBrad

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I'm a big proponent of trachs. I have found it much better than a mask and I am firmly convinced that I wouldn't have survived my bout with pneumonia without it. The hospital and my ALS doctor tried mightily to talk us out of it!

They told us about a trach patient who required 5 full time nurses and patients who suffered brain damage caused by the air flow being interrupted and so on...

Anyway here I am two years later doing just fine. The maintenance is nothing like we'd been told. We have taught several people to do it and how to handle emergencies.

Another thing I told them was that I could always be given a lot of morphine and have the vent turned off if I found life with it unbearable. Another thing was that it allowed us to "remove" me from life support versus actively ending my life, which is a moot point as we live in Oregon...

I have found life with the trach far better than being on NIV.
 

Meldz

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Thank you everyone for your input. It helped with my decision. I stuck with no intubation and I'm glad I did. The hospital will be glad to see me go. I had to tell them exactly how I wanted him cared for and they finally realized that I knew how to treat his condition. We will be saying goodbye to him today. He was just too sick. It has been a very short journey with this disease for us. I'm so grateful he won't have to suffer any more.
 

KarenNWendyn

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I respect your decision and would likely do the same if it were me. Wishing you peace.
 
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