Hi, it’s Patrik Hutzel from INTENSIVECAREHOTLINE.COM where we instantly improve the lives for Families of critically ill Patients in Intensive Care, so that you can make informed decisions, have PEACE OF MIND, real power, real control and so that you can influence decision making fast, even if you’re not a doctor or a nurse in Intensive Care!
This is another episode of “YOUR QUESTIONS ANSWERED” and in last week’s episode I answered another question from our readers and the question was
You can check out last week’s question by clicking on the link here.
In this episode of “YOUR QUESTIONS ANSWERED” I want to answer a question from one of my clients Paul as part of my 1:1 consulting and advocacy service! Paul’s dad is with Covid-19 in ICU with tracheostomy and for decannulation. Paul is asking if it is true that his dad would not need LTAC after decannulation.
My Dad is in ICU with Covid-19 and with Tracheostomy in Place. Is it True that My Dad Would Not Need LTAC After Decannulation?
Paul: Yeah. Well, that’s really sad. It’s really a terrible thing.
Patrik: It’s terrible.
Paul: I think his pulmonologist, the one who initially put him on the steroids really did a good thing. The fact that they gave him Remdesivir I think was very helpful. Plus my father his dad lived to be a 100.
Patrik: He’s a fighter.
Paul: Yeah. Like I said, he’s very trim. He’s active. He’s a very active 79 year old man. The hospital itself always portrays him, and this is frustrating to me when they say, “Well, he was in such terrible condition.” He had COPD when he came in here. I’m like, “Well, that may have been true, but it was undiagnosed, and it was latent,” because it didn’t manifest itself. He lives on a third-floor apartment, and he would carry groceries up and down. He’s never had a lot of health issues.
Patrik: That’s amazing. Paul, I think some tangible steps that need to happen to get him decannulated. He needs to manage his own secretions. He needs to have a good strong cough, which it sounds to me like he does, especially since he can manage the suction catheter, from what I understand. Also, when you talk to your dad, he is with it. He knows what’s happening? He’s not confused?
Paul: No, he’s fine. I mean cognitively he’s 100% there. He’s a little bit frustrated and depressed, but he certainly understands everything that’s going on. I talk to him every evening, and I don’t have any concerns regarding any loss of cognitive ability.
Patrik: His cognition. That’s fantastic. The reason this is important, I mean, a lot of patients after prolonged induced coma, after prolonged critical illness, which your dad has, are simply confused, and their cognition is not where it should be. That’s very positive, because that means he can comply with what they’re asking him to do, and it sounds like he is.
Paul: Absolutely. He just does whatever they tell him to do. Like I said my concern is that they’re not actively working towards a decannulation goal.
Patrik: I would say that with what you’ve shared, I would say yes, because bear in mind the CPAP hasn’t been off for 48 hours, is that correct? Just sort of 36…
Paul: Yeah, the CPAP was discontinued. I’m trying to think how it works. It was only on at the nighttime. So, it would be on maybe from 10:00 PM to 6:00 PM, or 6:00 AM, so he didn’t have it last night, so it would be the night before that. He hadn’t been on CPAP mode for 30 hours, or no 36 hours.
Patrik: 36 hours, so Paul given that the CPAP only finished, as you said, only 36 hours ago, I’d say its way too early to say they’re not moving towards decannulation. You can look at decannulation probably once your dad has managed 72 hours of the CPAP, then you can say, “Okay, now he’s managing off the CPAP. Now let’s look at decannulation.” Given that they are doing the Blue Dye Test, given that he’s managing the Passy-Muir valve for up to 16 hours, that’s fantastic. When you talk to him, you can understand his vocals, his voice sounds okay? He’s not getting exhausted?
Paul: No, he can talk. I mean, it’s hoarse and raspy, but it’s strong. It has strength to it. He has a lot of secretions, and he’s coughing a lot. That’s the other thing is he does have a cough reflex, so he’s hacking up a lot. The other thing is he had a loss of saturation, because they were giving him ice chips, I guess, and sips of water, and it caused what they call silent aspiration. This was about four days ago, maybe.
Paul: They sent a portable x-ray to look at his lungs, and they said that it’s not an issue now. He seems like he’s better.
Patrik: Okay. Look, the silent aspiration is an issue for patients with a tracheostomy. Also, once he’s decannulated, that’s probably the biggest risk. The biggest risk is, or one of the biggest risks, is probably aspiration. That’s why the swallow test is so important.
Patrik: That’s all right. That’s why the swallow test is so important. So, that he’s not aspirating because that could really set him back. That could really set him back. Paul, I argue that if he can stay off the ventilator in the next 48 hours, I argue he’s doing all the right things. If you’re telling me he needed suction twice last night, that’s nothing. nothing.
Paul: Well, that’s excellent news. He wants to go back on the CPAP mode, because he says it’s more comfortable for him. I’m like, I think that it’s good. When you first did 16 hours on the Optiflow it was a big deal. Everybody’s like, “Oh my gosh, he did 16 hours. That’s fantastic.” So, it stands to reason that if he could do 24 hours or 36 hours, it’s even better. That’s what I’ve been trying to tell him, because that’s not the ventilator.
Patrik: Here is another option down the line potentially, especially if your dad is reporting that the CPAP is comfortable. Let’s just assume he’ll be decannulated. He might have CPAP with a mask. A lot of people with sleep apnea and with COPD have CPAP overnight just with a mask. So, if he feels that’s beneficial for him, and if you understand why people have the CPAP overnight especially with sleep apnea or COPD, if they don’t have it, their CO2 rises, and then they tired in the morning or confused even. That could be an option down the line.
Patrik: I feel with everything that you’ve shared, Paul, I feel like he’s moving towards decannulation, and he shouldn’t need LTAC. The way I try explain this to people is LTAC stands for long-term acute care. Now the word in and of itself implies long-term. Why would anybody in their right mind wants to go to a long-term facility if there is another option?
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Patrik: Once he’s decannulated your father should go to a hospital ward and should go on to rehabilitation, the rehabilitation without an artificial airway so much easier.
Paul: Yeah, of course. I mean, the ultimate goal is to decannulate him. My concern really is just that he’s received artificial, or mechanical breathing. You know what I mean, he’s been intubated.
Patrik: For a long time.
Paul: Since June 18th. My concern is after 60 days, it’s really extremely difficult. I don’t know what the long-term implications are for having a tracheostomy tube in terms of the ability to swallow or speak again. It seems like speaking is not an issue, because of the Passy-Muir valve, but for swallow functions and cough functions and things like that, as well as the NG tube.
Patrik: Do you know what size tracheostomy tube your father has? Do you know the size eight, nine, seven?
Paul: I don’t, and the problem is I asked the nurse about that this morning, it’s good that you asked, I was going to bring this up. She said that they will not bring him down a tracheostomy tube size, because they don’t do it at that hospital. She said she was surprised because this is the only hospital that she’s ever been posted at where that’s an issue, or where they won’t do that.
Patrik: Look, I have seen people been downsized before they get decannulated, but I’ve also seen people going from whatever size they have to decannulation without any issues. I would say with everything that you’ve shared, Paul, I would argue that your father can be decannulated in the next week, obviously if he’s not deteriorating. If he continues on that path, I would argue he can be decannulated in the next week. The risk for somebody who’s been on a ventilator for a month, to end up back on the ventilator is definitely higher compared to someone who’s only been on a ventilator for a few days. There’s no doubt about that.
Patrik: I also take into consideration what you told me about your father about him being fit and healthy prior to this, and about your grandfather living until 100. I mean, those I believe are all significant factors coming into play.
Paul: Yeah, there’s no heart issues or anything like that. His blood pressure is low. Like I said he’s actually strikingly thin now. He’s lost a significant amount of weight in the hospital, but he seems to not be losing any more weight.
Patrik: With the nasogastric tube, I’m glad he doesn’t have a PEG. I’ll tell you why I’m glad he doesn’t have a PEG. A PEG I believe makes hospital and ICU LTACs. It makes them complacent, because then they’ve always got access for food, whereas the nasogastric tube is temporarily. Let’s take out the tracheostomy. Let’s then get him to eat a little bit. Once he can tolerate some food, let’s decrease the nasogastric feeds, let him to eat more, and then take the nasal gastric tube out. Whereas a PEG is more long-term. So, no matter what happens down the line, I would not consent to a PEG, even if they were doing the surgery for whatever reason.
Patrik: He’s not pulling out the nasogastric tube. He’s not irritated by it.
Paul: No, the gastric tube doesn’t really seem to present an issue. The main issue that I have is I’m worried about scarring, or some sort of hardening or something like that. I don’t know if that’s even a concern.
Patrik: Yes. It could cause a pressure sore in the nose, or even in the back of the throat, it could.
Paul: Well, I’m more worried about long-term. I mean, ultimately the goal is for him to regain his independence. He actually is pretty well off. He’s worked hard all his life and saved, and he’s on Medicare. I’m sure you’re familiar with how Medicare works. He’s never used it so he’s going come up on it at 60 days and start paying the copay. After that, it’s going to go back into the 90 to 120 days where the copay is $700 per day. After five months, there’ll be no more payments, so he’ll have to pay for long-term care out of pocket, which he won’t do, or he won’t want to do, and I’m worried about that. I just don’t want him to be in a facility if it’s at all possible.
Patrik: Paul, it sounds to me like he’s right on the edge of getting decannulated. The trajectory of the recovery hugely different compared to somebody going to LTAC, or somebody getting decannulated, and then going to a hospital ward, and hopefully work on a recovery, or on a rehabilitation without an artificial airway. It’s so much easier. I believe it’s a difference like day and night.
Patrik: Once your dad would go to LTAC. They’re trying to keep people there for as long as possible. Again, it’s a business at the end of the day. My experience with LTAC is not a great one.
Paul: Okay. So, based on what I’m telling you, what timeframe are we looking at towards decannulation? Would it be a week?
Patrik: I would think so. I would even argue maybe quicker. I think the next thing that needs to happen, Paul, is an ABG arterial blood gas, check the CO2. Also, watch for signs that he’s not getting exhausted, but also let’s just say he does get exhausted. Let’s just say he’s CO2 is a little bit elevated. Let’s just say that can happen. I still wouldn’t be discouraged, because he’s gone a long way. He’s had ARDS at his age, and he’s come out of it on the other end.
Paul: How old was he?
Paul: Oh my gosh. It’s terrible.
Patrik: It wasn’t the first one Paul in the last few months, it wasn’t the first one at that age where we were consulting, and people didn’t make it. Young people with comorbidities, most of them had diabetes, they were a little bit overweight, but they were young.
Paul: Yeah, so their lungs were in okay shape.
Patrik: It’s shocking. So, your dad has made it through ARDS at his age. That’s incredible.
Paul: Yeah, and his saturation is pretty good. Like I said when he’s at rest, he had 60% and 40 liters on the Optiflow. It’s right around 98%, but my main concern is lack of communication from the physicians, because it seems like the standard of care is there. Doesn’t seem like they’re doing what they should be doing?
Patrik: Paul, I am pleasantly surprised by what you’ve shared with me, because I believe that the only box that hasn’t been ticked from my perspective is the arterial blood gas. The boxes that need to be ticked are the following, swallow tests, speech therapy, the Blue Dye Test. They’re checking oxygen saturation. You talked about the Passy-Muir, that needs to happen. You talked about the frequency of suctioning, that’s happening. So, the missing part to me is the ABG. The other important part is he’s walking 150 feet after six weeks in a coma, or on and off in a coma, after ARDS-
Paul: He was conscious the whole time. He was actually never in a coma.
Patrik: Even so he was six weeks in a critical condition. Walking 150 feet that’s probably like running 5K for you or for me.
Paul: Yeah. Well, I don’t think I could run 5K.
Patrik: Yeah, sure, but you know where I am going with this. That’s incredible. I think the signs are there, that he’s close to decannulation. Yes, I agree with you if the doctors are not talking to you, that’s appalling. I have no other words. That’s definitely appalling. What do you think with the nurses? You say they’re communicative, are they experienced? What’s your impression?
Paul: I think that mostly, yes, they are experienced. I would say they’re all of critical care training. I mean, they’re ICU nurses, so they generally want to have more experienced people. They’re seem skilled. The nurse ratio is pretty good. They always seem to have time for me, which I appreciate.
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Patrik: Good. What about the respiratory therapist, have you spoken to them as well?
Paul: I have not, no.
Patrik: Okay. I guess that could be another point of contact for you, but their job is almost done. If he can stay off the ventilator, their job is almost done. Keep talking, touch base, with the speech therapist as well. Also, I’ll tell you another good thing. You said the Blue Dye Test is happening next week.
Paul: It’s scheduled for the next week, yes.
Patrik: It’s almost buying him time, I think, because even though it would be good if they could do it in the next couple of days, it almost buys him time in this particular hospital, because otherwise they might send him to LTAC prematurely, and once he’s there in the system. You see one of the challenges with going to LTAC as well is the treating team there knows him at the moment. If he goes to LTAC the treating team doesn’t know him. They start from scratch, and I just think there is a lot of room for mistakes to happen.
Patrik: I always argue that any transfer to another hospital, for somebody that’s just been through a critical illness, it interrupts a care episode. I’m just not in favor of it interrupting care episodes for someone that’s just come out of a six weeks critical illness. Doesn’t make any sense to me. That is unique to the whole ICU LTAC sort of relationship. I don’t get it. I’ve never been in favor of it, because most ICUs that I worked at people have recovered and have been weaned off in ICU. I have just seen that work. Rather than sending them to an LTAC that often is two hours away. I don’t know in your situation where the LTAC is, whether that’s far away.
Paul: 10 minutes, it’s not far.
Patrik: All right, but in some states in the US they go from Florida to Georgia, for example, and they go from New York to other states. It just doesn’t make any sense. People being taken away from their families, which is what they need.
Paul: Yeah. Well, sadly with COVID I can’t visit.
Paul: What you say is it seems like they’ve done an okay job at the ICU. Everything is progressing as you would expect it to?
The 1:1 consulting session will continue in next week’s episode.
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