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
How Can We Win Over the ICU Team in Keeping Our Dad in ICU Instead of Sending Him Out to LTAC?
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 Jeremiah, as part of my 1:1 consulting and advocacy service! Jeremiah’s niece is with a breathing tube and on a ventilator. Jeremiah asks what his niece’s life ahead will be with a tracheostomy in the ICU.
What Will Be the Life Ahead of My 6-month-old Niece with Tracheostomy in ICU?
Patrik: Good afternoon Jeremiah. How are you?
Jeremiah: I’m fine. Thank you. How are you doing?
Patrik: Very well. Thank you.
Jeremiah: Thank you for giving me time, sir. Thank you so much.
Patrik: Jeremiah, are you the father of the child that you are referring to?
Jeremiah: So, no, I’m her uncle. She’s my niece. And she’s hospitalized from almost a month and she’s in ICU.
Jeremiah: So she has been diagnosed as a case of, Spinal Muscular Atrophy Type I. And she’s only six months old right now. And she’s on an invasive mechanical ventilator over there. And they have also tried extubation on her and see if she can tolerate the breathing, spontaneous breathing. So she couldn’t, after four hours, they had to intubate her again because she got cyanosis and then they had a plan to extubate her again and then let her, on her fate. But it was a difficult decision for the parents. And we couldn’t agree for this.
Jeremiah: She’s only seven months old. Then they have given the option of tracheostomy, so that she can get some help in additional air. And her all labs are normal. She’s hemodynamically stable, she’s quite alert and a conscious kid. And she’s moving her arms. Only, she has weakness in her legs. But the thing is that she’s not being offered any further treatment for her case, which is spinal muscular atrophy, no gene therapy and no Spinraza. So this was all the information I was having.
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Patrik: How long has she been intubated for, how many days? Weeks? How long?
Jeremiah: So, I think it’s the third going fourth week.
Patrik: Alright. They are offering a trach. They are offering a tracheostomy.
Jeremiah: Yes. Now they have offered the tracheostomy. But before they said that we will extubate her and we will let her on her fate.
Patrik: And when did they say that?
Jeremiah: They said this last week.
Patrik: And what was your family’s response to that? What was the parents’ response to that?
Jeremiah: No, sir we couldn’t agree. This is like, many people are in this for years and they are in comas when they do not respond. This child is responding herself. She’s conscious. She is alert, and number one, all her labs are normal. All her organs are functioning. Her brain is working. Her heart is working. So this was a difficult decision.
Patrik: So, what stops you? What stops you as a family to agree to a tracheostomy? What stops you?
Jeremiah: I’ll check. We are not sure if the child will be able to bear the procedure or how, what will be the consequences ahead and whether the benefits, according to the doctors, that she will be at risk of infections in ICU, if she remains intubated for long? So the trach is another option for her, if the family wants. So now, I saw a lot of your videos and a lot of response. And then I contacted you to get some idea for the baby, because she’s too young.
Patrik: Absolutely. So is she in an induced coma at the moment because of the breathing tube?
Jeremiah: No, no, she’s not in coma. She’s, as I said, she gets awake, she plays with the toys. She is a conscious baby, but just here, severe muscle weakness, and then maybe spinal muscular atrophy, her respiratory muscle can get involved. And that’s the reason she’s having weakness that she cannot breathe herself. That her pneumonia has subsided according to them. And she contracted rhinovirus. That is also not there. Her cultures are negative at the moment. X-rays also okay.
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Patrik: Is she intubated through the mouth or through the nose?
Jeremiah: Mouth.
Patrik: Okay. Are you a medical personnel? Are you a doctor? Are you nurse? You seem to have some insights.
Jeremiah: Yes. I’m a medical student.
Patrik: You’re a medical student. No, I could see that in your email, in your message that you’ve got. Okay. So…
Jeremiah: This case is like beyond my knowledge.
Patrik: Sure, sure. The reality is if you are not giving consent to a tracheostomy, she can’t be on a breathing tube forever. Okay. I can tell you what I know about spinal muscular atrophy type one. We have clients here. I’m in Melbourne, in Australia. We have clients here in Melbourne and we are providing the service Intensive Care at Home here in Melbourne. We have clients, we have children that were referred to us through palliative care and they were referred to us to go home, to die, okay. With and without a tracheostomy.
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Patrik: However, they then started giving the Spinraza. Like you mentioned. Now, the Spinraza has done miracles for those kids. Miracles. Those kids initially went home to die. And now those kids have been discharged from palliative care, meaning they’re living a good quality of life. If you extubate your niece now and she’s dying, she won’t have that opportunity. Now I can’t talk about whether you can get your hands on Spinraza. I don’t know enough about it, about your import of medication and whatnot. But what I can tell you is this, all the children that came to us a few years ago through palliative care to go home to die, are all well now because of the Spinraza.
Patrik: Okay? So by you delaying a tracheostomy.
Patrik: And potentially do a one way extubation, right? May quite literally kill your niece and may not give her the chance to get Spinraza, eventually. Therefore, I would argue a tracheostomy is the next step. Now that’s not to say, what are the next steps with the resources that are available in your environment? It’s not as simple as, okay, you’re doing a trach. And then, you got to look at what’s next. In most countries, people stay in ICU for a long time to come. If they go home, there’s not services available like here, like Intensive Care at Home. So, you could argue the challenge is just the beginning because, yes, you can save a life with a tracheostomy, you can prolong life and you can improve quality of life. But then where to, from there? Can she stay in ICU for the rest of her life? No, of course not. So the question then is what’s next? But in the short term, absolutely, you will save her life. You give her an opportunity to look at Spinraza available for her. Has she left hospital at all? Since birth?
Jeremiah: Sorry?
Patrik: Has your niece left the hospital at all? Since birth, has she been home at all?
Jeremiah: She has been home. She was having just had mild cough once in the third month. But her mother noticed there was no neck holding with. Unfortunately, nobody noticed it so much, so that I think it has been it was missed from there. So now when she’s on the ventilator, there is Spinraza available. They have Spinraza available in their location. They don’t have Zolgensma, however, but Spinraza, they’re not giving her because she’s on ventilator. So I don’t know.
Patrik: Well, one way to get her off the ventilator is to give the Spinraza from my experience, right? What I’ve seen is with Spinraza, you can avoid the tracheostomy. We’ve got a couple of kids that are on BiPAP now just on non-invasive BiPAP with a mask, right? But in the short term to get her out of ICU and to get rid of that breathing tube, I would still argue that a tracheostomy is the right next step. You don’t want a breathing tube for longer than necessary.
Jeremiah: And so what will be her life ahead with the tracheostomy?
Patrik: I can tell you what it’s like. That’s a very good question. From my perspective, and from my experience, she will need 24-hour care at home, with ICU nurses just simply because of the trach. But then the question is, can they give Spinraza sooner than later, and then get rid of the trach?
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Jeremiah: I have a request, sir, because, like now I’m having verbal communication with you for all this. Can you give me a letter about the Spinraza treatment on a child?
Patrik: Look, as I mentioned to you, I can’t provide free services beyond the free 15 minutes. I’m too busy. If you wanted any further advice, you would have to sign up for any of the options that I emailed you. This is a complex case, it’s not as simple as, we could talk about this for the next two hours. I could give you a picture of what her life will look like. And the last thing that I want to leave you with is… We’ve had two clients just around end of last year, two kids. They both had a tracheostomy. We were doing night shifts with our ICU nurses at home. There were no day shifts because there was no funding. Both clients passed away during the day with a medical emergency because the family could not manage medical emergencies with a tracheostomy. So, for a tracheostomy to save her life, you got to look ahead and you got to look at, okay, what does care need to look like before she can get hopefully rid of the tracheostomy.
Patrik: So, Jeremiah, we are in Australia.
Jeremiah: So, where in Australia. If I recommend them.
Patrik: Sure. Melbourne and Sydney, Melbourne and Sydney.
Jeremiah: Ok. Melbourne and Sydney.
Jeremiah: Okay, sir. So we will go with the tracheostomy after your advice.
Patrik: I would strongly advise for it, but making inquiries about the Spinraza probably also depends. Do they have any experience there? It’s a fairly new drug. It’s a fairly new drug. It’s been around here in Australia, probably for about three years now to my understanding.
Jeremiah: So I don’t know if the cost is the issue or the side effects is the issue or the unavailability?
Patrik: There are side effects and there are issues because it’s done through a lumbar puncture. So the risk is high, but the benefits are huge.
Jeremiah: So how many doses are required?
Patrik: Oh, I probably about two a year, continuously. It has to be given. It’s an ongoing thing, but I can tell you those kids without the Spinraza would probably not be alive by now.
Jeremiah: So I don’t know. Everybody’s making us so hopeless about my niece that, and they’re not here.
Patrik: No, there’s no reason not to be hopeful. No, definitely no reason. If she can have two Spinraza from my experience, she will have a reasonable, a much better quality of life. The life expectancy for spinal muscular atrophy, without Spinraza, I believe was about seven to 10 years.
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Jeremiah: So how can I pay you to get this letter for my niece?
Patrik: Bear in mind. I am not a doctor. Are you aware of that? I’m not a doctor. I’m a critical care nurse.
Jeremiah: Because I have to show them in written that Spinraza can be given to the child?
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Patrik: Oh, that part. I don’t know. Again, I am not a doctor. I’m only talking from my experience, what I’m seeing with our Intensive Care at Home kids. Right. Even if I write them a letter, I’m not a doctor. I’m just talking from experience. I worked in ICU for over 20 years. I think I have a reasonably good understanding of what’s happening in this world, but I am not a doctor and I would never claim to be a doctor.
Jeremiah: What you are doing more than a doctor sir. Okay. Then what do you recommend me? Any doctor to contact for it? No?
Patrik: You could contact, have a look on their website and have a new look at the neurology department on and have typed in to google, spinal muscular atrophy, Spinraza. You’ll find something. Okay. I need to go. I need to go. I really hope it’s going to work for her and for your family.
Jeremiah: Thank you so much. That’s really helpful. Thank you so much. God bless you. Thank you so much.
Patrik: Take care. Thank you. Bye. bye.
The 1:1 consulting session will continue in next week’s episode.
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Thank you for tuning into this week’s YOUR QUESTIONS ANSWERED episode and I’ll see you again in another update next week!
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This is Patrik Hutzel from INTENSIVECAREHOTLINE.COM and I’ll see you again next week with another update!
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