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
My Sister Has a Brain Injury in the ICU. Is it Possible for Her Tracheostomy to Be Removed?
You can check out last week’s question by clicking on the link here.
In this week’s episode of “YOUR QUESTIONS ANSWERED” I want to answer questions from one of my clients Mikaela, as part of my 1:1 consulting and advocacy service! Mikaela’s sister is with a tracheostomy in the ICU
and is now off the ventilator. Mikaela is asking if her critically ill sister with severe brain injury will ever wake up in the ICU.
Will my Critically Ill Sister Ever Wake Up and Recover from her Severe Brain Injury in the ICU?
“You can also check out previous 1:1 consulting and advocacy sessions with me and Mikaela here.”
Part 1
Part 2
Part 3
Part 4
Part 5
Part 6
Part 7
Dr. Rich: To the intensive care. It’s just because there’s a lot of other people.. We don’t want too many people in the wards with tracheostomies, because that’s how we can manage them all.
Joseph: For me, it’s the visitation, really. I can’t really go and see her. I haven’t seen her for the past two and a half weeks, now, which is a long time, and I’d like to see her today for half an hour.
Dr. Rich: Yes, I know where you’re coming from. Her brain will either be at this lower level stage, that’s where we’re assessing… What we’re doing is rehab. There’s nothing that can be done, it’s just trying to pick up on any early signs of recovery. We’re really in an assessment stage.
Rinzzie: It’s just been so difficult. It’s just been horrible.
Mikaela: Is there any such thing as a timescale for this thing? So like when you sleep too much?
RECOMMENDED:
Dr. Rich: Yes, there is. The timescales tend to be shorter for hypoxic brain injuries than traumatic brain injuries, because the prognosis is a lot worse for hypoxic than it is for traumatic brain injury. And certainly, even in other countries, they would do assessments in about 3 months, and the data would show if you’re still very low on the consciousness scale at 3 months, the chances that your score in consciousness scale at 3 months for some of the hypoxic injuries is really, really poor indeed. They tend to take 12
months, and not to say that she wouldn’t improve from what we’re finding, even at this early stage, we’re not seeing much inkling of any pathway at the minute. We’re still at the assessment stage of course so to see if anything’s just developing, and it does change over time.
Dr. Rich: Talking about visiting and those kind of things, there are specialist units around outside of hospital that take patients for more protracted assessments over the time. Honestly, that’s actually probably what we’ll be thinking of with your sister, trying to make sure we get the basics done here, and actually allow her out to… Into somewhere which has a cohort in a similar situation where they do these kinds of assessments over 3, 6
months, even longer if need be.
Mikaela: And they have the ability for tracheostomy care, as well?
Dr. Rich: Yes.
Mikaela: Yes, okay.
Dr. Rich: There’s not many around. There’s a place that’s actually probably takes the most number of people in this area. They’ll tend to be privately run. There’s this facility that pay for units, if you like, and providers, and they’ll take people from all over the country. There’s quite a few around. I’m trying to think where else apart longer than that, as well. So, that’s a few kilometers away from here, and they’re probably the closest
unit.
Dr. Rich: There’s big advantages, because they tend to be a little bit freer with the visiting, and also there’s a less acute hospital environment. Almost counter-intuitively, it can be a little bit safer than before, because there’s less of the hospital around, and there’s… And it just allows that visiting over time… Again, in hospital, you tend to get processed around a little bit, people have to change rooms and move around.
Suggested links:
Mikaela: That’s what we’re looking at going down rather than anything, just because there is situations… I think Patrik said a while ago when he was in his job that the funded, a family, as well, for a similar situation.
Dr. Rich: Yes. And that sounds new. There’s no rehab unit that takes services for tracheostomies in this area. There are private sector, but with government funding. That’s probably what we’ll be looking towards. There’s quite a few things to tidy up before we can get to that stage. I think we need to ensure that she’s medically stable, because we don’t want her to go and immediately go off and immediately run into a complication and rush
back to the hospital, and it’ll be very messy and not safe for her. So, we want to make sure we’ve got stability. But we need to work out what we’ll do with feeding, because currently, she’s got a temporary feeding tube that we need to get out of hospital safely, we need to put a long-term feeding tube directly into her stomach. That’s one of the things I’ll talk about today, as well, actually, its… I think probably biting the bullet and doing that sooner rather than later is probably a good idea.
Dr. Rich: If we’re going to go for assessments over the next 3 months, if that’s what we’re looking at here, then getting that tube out of her nose before it starts causing any problems, or for longer-term feeding tube. My experience of most nasogastric tubes is, they’re easy to dislodge and they put pressure on the nose. They’re not nice, they’re in your eye line, and your nose is very sensitive. Putting a longer term is better. And that’s
an endoscopy under an anesthetic, camera down.
Mikaela: I don’t think she’ll need an anesthetic, though.
Dr. Rich: I think they will anyway, because it’s… Sometimes, it’s done under mild sedation or some kind of anesthetic, but..
Dr. Rich: And they can find it quite difficult to express discomfort as well, so we need at least some sedation and pain relief for that. But it’s a very quick procedure, and it’s something they do a lot of times. The problem with the nasogastric feeding is that the tubes do become dislodged. Often, it
takes quite a bit of time to put them back down, so you’d get gaps in feeding, which is not good for your nutrition, because good nutrition is really an important part of the rehabilitation process.
Mikaela: I think she lost a lot of weight from this.
Recommended:
Dr. Rich: She will do. A lot of people are acutely unwell, actually, your body preferentially burns muscle rather than fat, unfortunately. So, everyone who’s been in the intensive care unit loses mass. Sometimes, you’d like to lose a bit of fat mass, your body doesn’t do that for you. It goes through so much weight loss when you’re horrendously unwell or something, it tends to burn muscle faster. It’s another reason why people are very, very
weak in the intensive care unit.
Rinzzie: Yeah.
Dr. Rich: Yes, exactly. But when you’re very, very unwell, and you burn huge amounts of calories, and you can access calories far more quickly from muscle than you can from fat. So, it’s just a common thing that we see in intensive care. It’s universal to intensive care, everybody loses muscle mass, and we try and stop the loss as much as we can, essentially, and with good nutrition to secure… Because if there’s any nutrition coming in, her
metabolic needs will be coming down as she stabilizes medically, and then we should be able to match it with what we’re putting in. So, hopefully, her weight loss should have pretty much stabilized by now, or should be close to that, and then it’s looking at maintaining what you’ve got in the situation.
Mikaela: So, when are we looking to do the stomach one? The feeding tube?
Dr. Rich: She’ll need a theatre slot, essentially, an endoscopy theatre slot. Usually, it takes me at least a couple of weeks to get one. I haven’t put a referral in yet, because it just… It felt a little bit too early, but actually, this week, she’s pretty stable, and I think probably we could do it. So, I will look at getting the referral in this week to book a slot when it becomes available. It can be anything from a week to 4 weeks
depending on capacity, and availability, and her stability.
Joseph: Yes.
Dr. Rich: To actually go down and get everything set up, get the anesthetists and all that, it takes far longer than the procedure, which takes about 15 minutes, and then she’ll be in recovery for 4 hours or so after. Then she’ll be brought back to the ward. It’s pretty common procedure.
Joseph: Are there any complications with that?
Dr. Rich: There would be… I’ll take you through a consent form. I think it’s written in the consent form, as well as all about the complications. By far the most common complication is a chest infection, which we’ve minimized by just keeping an eye on her tracheostomy. So, just, when you put someone through something like that who’s not able to protect their airway in the same way, a chest infection actually, strangely, the most common
complication, but it tends to reflect the fact that a tracheostomy is at risk of chest infections anyway. You can get… Obviously, you can get hemorrhage accidentally… They can see what they’re doing, so they shouldn’t hit a blood vessel, but it does happen sometimes, and there would be blood transfusions or, in the worst case scenario, if you put a hole through the stomach and it tears, we would need surgery to put it right. And I have to say, for your sister that would be a catastrophic event.
But I’ve never seen it happen, I’ve never come across that. I’ve never seen it. It’s really rare.
Recommended:
Dr. Rich: The gastroenterologists will tell you it’s about one percent, but it’s not my experience that it’s one percent. I’ve never seen that in my 15 years of doing this. So, it’s really… But I think it probably used to happen a lot more.
Joseph: Is it gonna be safe?
Dr. Rich: It’s safer now. But it’s actually safer in the long term.
Mikaela: It’s safer?
Dr. Rich: Because if you leave it in, and the gastric tube’s been in there long term, it easily gets dislodged, and if someone puts feed down when it’s actually not in the stomach properly, it will go into an airway and cause a chest infection.
Mikaela: I don’t think any of the rehab centers take patients with nasogastric tubes. There’s too many gaps in feeding and nutrition when we have nasogastric tubes. They can get dislodged, and also we need to do x-ray when they’re put back in, which would mean transfer back to hospital.
Dr. Rich: I actually think there’s a huge amount of mileage in these situations. Again, long experience of doing sooner rather than later.
Rinzzie: Sorry, it’s an awful question to ask, but has she been urinating okay, and has she been-
Recommended:
Dr. Rich: Yes. In terms of the catheter, she’s draining an appropriate amount of urine, so her kidneys are good. So, that’s-
Joseph: Yes. And does she actually poop?
Dr. Rich: Yes.
Joseph: She does. Right, okay.
Dr. Rich: Again, because she’s not moving around as much, she needs medical support to keep her bowel moving, so she’s on some laxatives, I’m pretty sure. Yes, and that’s a bit of a balance, but sometimes you need to use bowel care from the other end, as well, just to help you pull it together. And again, it’s yet another very common complication. Bowel management can be really problematic, because she can’t push, and her posture is not
right, that kind of thing. Again, it’s just another… It’s one that we’re very used to dealing with, but yes, it’s not… Her bowel function is not normal, stool is getting impacted and constipated and things. So, we have a regimen that we use just so we’ve not had those issues, but it’s just… It’s something that constantly needs attention. Another thing that constantly needs attention is nutrition, her continence, her bowel, her airway.
Recommended:
Dr. Rich: It’s all part of it, and it’s not a trivial thing to just keep the status quo. If you’ve got a catheter down into your airway, something I’d be worried about is if somebody’s not really aware of what’s going wrong, sometimes the only way you get any kind of reaction… So, for instance, when I did botox injections into the saliva glands, I definitely got withdrawal response at times when I did them, so she pulled away, but she
automatically had responses.
Dr. Rich: Most of the time, she’s not aware of anything, and then at times, she is aware of unpleasant things.
Joseph: The other thing that was said was, there was a bit of a shrinkage on her brain when the MRI was done.
Mikaela: EEG
Joseph: Oh, the EEG. Okay.
Dr. Rich: It’s an electric… EEG is like an electric brainwave, and that wouldn’t give you information about the shrinkage, it does tell you that the electrical activity is not normal.
Joseph: But she has definitely-
RECOMMENDED:
Mikaela: It’s not the EEG.
Joseph: No, no, no. It was definitely an MRI scan or CT scan.
Dr. Rich: An MRI would be something that..
Joseph: Yeah.
Dr. Rich: Okay.
Joseph: Yes.
Dr. Rich: Sorry, that would be…
Joseph: So, it was the CT scan or something, and they just needed to check where this pain came from, because she hadn’t had it since-
Mikaela: So it was the CT, yes?
Joseph: Yes, it was the CT.
Mikaela: Yes, sorry.
Joseph: So, that was… Initially, the first week, she had about two, three seizures, and that stopped completely. And then, all that time, then I think it was last week when she had the seizure and they did a CT scan. And they said there was a bit of shrinkage on her… Was it on the right
side of the brain? I can’t remember.
Mikaela: They managed it with Keppra at the moment.
Joseph: And she’s not having any more seizures.
Mikaela: No, no.
Joseph: So, what does that mean, the shrinkage side of her brain?
The 1:1 consulting session will continue in next week’s episode.
