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Today’s article is about, “My 32-Year-Old Son’s with
TBI (Traumatic Brain Injury), Midline Shift, Craniectomy, CSF (Cerebrospinal Fluid) Leak, 45 Days. How Long to Wake Up?”
You may also watch the video here on our website https://intensivecarehotline.com/ventilation/my-32-year-old-sons-with-tbi-traumatic-brain-injury-midline-shift-craniectomy-csf-cerebrospinal-fluid-leak-45-days-how-long-to-wake-up/ or you can continue reading the article below.
My 32-Year-Old Son’s with TBI (Traumatic Brain Injury), Midline Shift, Craniectomy, CSF (Cerebrospinal Fluid) Leak, 45 Days. How Long to Wake
Up?
Patrik: Paula, you are live on the show now. Can you hear me? Looks like you’ve got trouble connecting. Trying again.
Paula: Can you hear me?
Patrik: I can hear you, Paula.
Paula: Hi, there. Well, it’s rough. I am in ICU. My son suffered a traumatic brain
injury after a bike accident, and he did have a helmet on. He is 32. So, we’ve been in ICU for 45 days. Right now, his vitals are stable. His eyes are still dilated. He’s only had trace movement in his eyes, but that’s it.
Patrik: Wow. Wow. 45 days. So, what was the initial diagnosis? A traumatic brain
injury?
Paula: Yes. Yes. Anoxic traumatic brain injury.
Patrik: What else? Anything else?
Paula: Well, he did have some internal injuries
and a broken arm.
Patrik: But basically, he’s not coming out of the brain injury at the moment?
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Paula: He is not coming out of the coma. But they’ve relieved the intracranial pressure, that was a battle for about two and a half weeks. Now, they did a craniectomy, but he is what’s called a midline shift, paradoxical shift. So, they’re going to go ahead and put the skull back in and put a shunt. They put one shunt in, and it is not working. So, they’re going to have to test that shunt and possibly put another one on the other side. It’s a rough
road. I’ve gotten a lot of conversations about, “Well, we don’t know his quality of life.” I just thought, “Well, nobody knows that right now. It’s unknown.”
Patrik: There’s plenty of time, Paula, to talk about end of life in case things don’t improve. I mean at the moment; all efforts should be made to improve your son’s situation.
Paula: Yeah, that’s how I feel.
Patrik: Right, right. Is he still in an induced coma or is it a natural coma now?
Paula: Well, it’s a natural coma. So, he was induced for the first 3 weeks.
Then, they took him off of the paralytics, the phenobarbital and all of that. All that got taken off. His drug score went from a 35, finally down
to a 10. I am assuming by now it’s all out of his system.
Patrik: Yep. Did he get a tracheostomy by
now?
Paula: Yes. So, he was ventilated, but he is breathing on his own. Our first MRI, the doctor said, “Well, it’s not as bad as I thought. His spinal cord is intact. There is a lot of damage. However, I can see a lot of contrast.”
Patrik: What do you mean
with contrast? They’ve done a contrast?
Paula: I don’t know. In other words, he could see the contrast of the injury versus the good parts of the brain.
Patrik: Oh, I see. So, he had a CT (Computed Tomography) or an MRI (Magnetic Resonance Imaging) with
contrast?
Paula: Yeah, he had an MRI and lots of CTs. He’s had lots of CTs because he developed hydrocephalitis where he is just throwing off all fluid, and that’s why they’re going to go ahead, and they’ve drained him. They’ve drained his skull, and now they’re going to put a shunt in, one hopefully that works, and then put his skull back in.
Patrik: Yeah, yeah. Okay.
Paula: But there’s something called a paradoxical midline shift.
Patrik: Yeah. Yeah. Are they still measuring his ICP (intracranial
pressure), his brain pressure? Or have they stopped measuring that?
Paula: No, they’re continuing to do that. It’s been between two and five.
Patrik: Okay, okay. That’s interesting. So, they’re still doing that, but it hasn’t been high?
Paula: No. Only the first two and a half weeks, it was high, and it was a battle to keep it down. But now, our battle is the fluid and over producing fluid and ventricles that are dilated and throwing off more fluid and more fluid. So, he’s been draining now. Unfortunately, the interior shunt never worked, so they had to do an exterior drain.
Patrik: Exterior drain. That’s in his brain right now?
Paula: Yeah. Yeah. Draining, yeah.
Patrik: Obviously his antidiuretic hormone is not working if he’s producing too much urine, is that what
you’re saying?
Paula: Wow. I don’t know about that. Oh fluid, brain fluids, CSF (cerebrospinal fluid)?
Patrik: Oh, brain fluids. Okay. I see. Okay. You’re not talking about the antidiuretic hormone. You’re talking about CSF.
Paula: No.
Patrik: Okay. That’s okay. So, where’s the CSF coming out? From the drain?
Paula: From the EV, the external drain-
Patrik: From the EVD.
Paula: The shunt that they installed, it never worked.
Patrik: Right.
Paula: So as soon as he’s fit for surgery, they’re going to take him in for surgery, they’re going to replace the skull and put in another drain.
Patrik: Wow.
Paula: I mean, a shunt. A shunt.
Patrik: Which, given that he’s got an EVD now basically for 45 days, that’s also a big infection risk.
Paula: Yes. Yeah.
Patrik: Thank God he hasn’t had an
infection.
Paula: Well, he has elevated white count. His white count is up to 22. So, got him on three different antibiotics, and the doctor will do the surgery as soon as his white blood cell count comes down. Then, we can get the surgery taken care of, and get a skull back on and get a shunt put in.
Patrik: Right, right. Does he have any seizures?
Paula: No, not that I know of. The EEG/electroencephalograph came back good.
Patrik: He’s not on any anti-seizure medications?
Paula: I believe they have him on Keppra.
Patrik: Okay. Probably it would be on something. Most likely it would be on something.
Paula: Keppra, propranolol.
Patrik: Okay. Once surgery is done, with a shunt, what’s next?
Paula: Well, if he wakes up, we can get into a really good rehab. If he wakes up, if he shows a little bit of command, then we can get him right into rehab, physical therapy, and where they’ll keep him stimulated and keep him awake.
Patrik: Yeah. Okay.
Paula: So, I know we have a rough road ahead, but we’re willing to climb it.
Patrik: Yeah, no, definitely. Definitely. He’s completely off
sedation now?
Paula: He is off sedation, yes.
Patrik:
Yeah, no, that’s good. And no other, like you mentioned, no spinal injury, no other major injuries, it’s really just a neurological issue now?
Paula: So, he did have a C2 fracture. He has a Miami J collar on, so he’s had that on for 45 days.
Patrik: Day 1.
Paula: Yeah.
Patrik: He’s nowhere near ready to have any rehabilitation stimulation. Is he not getting any physical therapy yet.
Paula: No, we’re just
putting him in a seated position. This is our third time where we’re putting him in a seated position.
Patrik: Right. Because one of the things that I know that is one of the risks here, and I understand with head/brain injuries, you can’t start physical therapy and mobilization as quickly as with other patients.
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Paula: Yeah.
Patrik: One of the challenges that I can see is if they’re not starting to mobilize him, he might get contracted, his joints might get contracted.
Paula: Right.
Patrik: I’m not sure if they are taking any measures
there to even do light physiotherapy or physical therapy, because if he’s waking up and-
Paula: Yeah, I’m doing it. I move his legs about three times a day and I try to move his arms and shoulder, and I rub his muscles down and give him a massage. They do have leg cuffs on him to keep the calf muscles moving.
Patrik: Yeah, good, good.
Paula: Yeah.
Patrik: Good.
Paula: Yeah.
Patrik: Because if he improves, hopefully, and you don’t want him to not being able to rehabilitate because he’s got contractions everywhere. That wouldn’t be good.
Paula: Yeah. Well, just from you saying that I’m going to up my schedule to five times a day, maybe
more.
Patrik: All the joints, knees, heels, elbows, arms, hands, all of it really.
Paula: Yeah, I’ll do it. I’ll keep in there. I’ll up my schedule.
Patrik: Right, right. They should be doing it too. They should be.
Paula: Yeah. So far, no. No, because we’re just in the ICU and keeping him stable, but I’m the only one that does the physical therapy part of it.
Patrik: Right. Okay. It sounds to me like you are in good spirits, which is half of the battle.
Paula: Yes. Yes, it is. I cry a lot though. I do definitely have my moments.
Patrik: Yeah, I can imagine. I can imagine.
Don’t give up. If they’re still going on after 45 days, I mean, they must see some hope as well, I would think.
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Paula: Well, they do, but they’re starting to give me that timeline and quality of life speech, and I’m just not wanting to hear that. I’m wanting to keep in the
fight.
Patrik: Yeah. Like I said, God forbid, if things don’t turn out, there’s plenty of time to talk about end of
life, but as long as he’s making progress, even the smallest progress might get him to the goal eventually.
Paula: Yeah, yeah. And that’s what we’re working toward. We’ve got a little infection to conquer and then try to keep pushing him forward the best we can. So, I know they’ve got him on a ketogenic diet. They got him on two
or three different antibiotics right now, and then the anti-seizure Keppra medicine, and amantadine, and propranolol for neurostorming.
Patrik: Right. Is he having a PEG/Percutaneous endoscopic Gastrostomy tube already?
Paula: Yes. Yes.
Patrik: Okay.
Paula: Yeah. He’s got a feeding tube.
Patrik: Got it. A feeding tube in the stomach, not in the nose?
Paula: Correct. In the stomach.
Patrik: Yeah. Yeah. Okay. Just be mindful that if he does wake up, they might want to send him to an LTAC (long term acute care) sooner than later.
Paula: That has been the discussion. They’ve discussed doing an LTAC, and I thought, “We’re trying to fight to stay here at the hospital,” unless do you recommend LTAC or stay at the hospital?
Patrik: No, no. Stay at
the hospital.
Paula: Okay.
Patrik: Stay at the hospital.
Paula: I think so.
Patrik: Or the only thing that I would recommend once he is more awake, to target neurology rehabilitation.
Paula: I’ve reached out to a neuro rehab, Craig Rehab in Denver.
Patrik: Yeah. That’s what I would be focusing
on, Paula.
Paula: Yeah.
Patrik: Definitely not LTAC. It needs to be very specific to what your son needs.
Paula: Okay. Well, thank you. We want to get
out of here, get medically sound and stable, and then they’ll downgrade us here. Then, we want to go straight to the neuro rehab, no other rehab, but neuro rehab.
Patrik: Yeah.
Paula: Yeah. But first surgery. First surgery. But thank you so much for taking my
questions and concern. Your site has really helped me in this battle that I’m in currently.
Patrik: Yeah. No, that’s really good to know. That’s wonderful to know.
Paula: Yeah. Thank you.
Patrik: It’s a pleasure. All the best, Paula to you, your son, and your family.
Paula: Thank you so much. Take care.
Patrik: And you. Thank you so much. Bye-Bye.
Paula: Bye-Bye.
