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Hi, it’s Patrik Hutzel from intensivecarehotline.com with another quick tip for families in intensive care.

So today, I have an email from Peter who says,

“Hi Patrik,

How’s it going? The update since we last spoke is my mother has had a tracheostomy. She’s been doing very well in her recovery where she was on the T-piece for about a week.”

Just to explain, a T-piece is basically humidification with oxygen when someone is being taken off the ventilator with a tracheostomy so that the air and oxygen is humidified and warm, which is very important when breathing via a tracheostomy. Other devices instead of T-piece that can be used is also a tracheostomy collar or a tracheostomy hood.

Then Peter continues, “But the doctors keep pushing for a PEG (Percutaneous Endoscopic Gastrostomy) tube, but since we don’t want a PEG tube, and my mother has varices in the stomach. They did a CT (Computed Tomography) scan of her stomach, which I was aware of, but they did not get my consent to stick a camera down her throat which caused bleeding in her tracheostomy and lungs which caused her to go from the T-piece back to CPAP (Continuous Positive Airway Pressure) and she’s lost all her progress.

I’ve been hands on with my mother’s condition. When I came in the next day, I knew something was wrong to a perfectly fine handling the T-piece, I found out someone in the hospital requested to do their own thing and found out they were trying to find another way to send my mother to an LTAC (Long Term Acute Care) by trying to do a PEG tube, which is not on file or requested by me and my family. They don’t want to say who requested, but staff have admitted to their plans from what they told me, and it had to do with the bleeding and lots of progress overnight.”

I need to stop here for a moment because it’s quite a lengthy email, but I need to stop here for a moment to explain. So, you didn’t want the PEG tube because she’s got varices in her stomach, which is only fair enough. Even if she doesn’t have varices in her stomach, you shouldn’t give consent to a PEG tube.

I’ve said on many of my podcasts here do not give consent to a PEG tube when you have a loved one in intensive care. Unless they can never eat and drink again, they can never swallow again, that’s when a PEG tube comes in, but your mom is not there yet. So, you’ve done the right thing by not giving consent to a PEG tube. It sounds like they’re serving their own agenda but they’re not serving what’s in the best interest of your mother.

Now, it sounds to me like they’ve also done a bronchoscopy.  You’re talking about a camera down the throat so they must have done a bronchoscopy, for whatever reason you haven’t even given consent, it sounds to me like it may have been an emergency where they had to clear some mucus or sputum of her chest, and that might have been why they’ve done the bronchoscopy but it’s not clear to me. But normally, they can’t do a bronchoscopy without you giving consent. I know, Peter, that you have been the power of attorney for your mom in a situation like that.

So, then you are carrying on that she had a big setback. So, she was on the T-piece. She was breathing spontaneously. Then she had the bronchoscopy, had the bleed. I know your mom has liver cirrhosis, which means her coagulation is probably off the charts. It’s probably out of order, out of whack, and therefore, she’s at much higher risk of bleeding than probably any other patient.

So, they should have definitely given it a second thought before doing a bronchoscopy because now your mom has gone back. Now, they’re trying to push the PEG again because it’s self-serving sending her out to LTAC because now she’s presenting the worst-case scenario for an ICU team.

What’s the worst-case scenario for an ICU team? I’m glad you’ve asked. The worst-case scenario for an ICU team is to look after someone indefinitely with an uncertain outcome, and that is exactly the situation your mom is presenting with.

Now, you’re also saying, “Then next, I noticed they were requesting a swallow test but only when her ammonium levels of the liver are high, which gives a weaker swallowing due to her levels being so high and they cut her medication back on her lactulose.”

I’ll just stop there, just to explain. So, Peter’s mom has liver cirrhosis. Her ammonium levels are high which makes her brain foggy. One way to get rid of high ammonium levels is to keep lactulose regularly to increase the frequency of bowel motions and get rid of a high ammonium and clear up the foggy brain.

Now, if she is not being able to swallow because she’s drowsy because of the high ammonium, then it’s the right thing to keep giving the lactulose and clear up her ammonium.

But now you are saying they cut a medication back which again you’re saying, “And having their own agenda, which is causing more harm than good when she had been making so much progress. I plan on taking it up with their safety team soon because they are getting me worried about sending her to the LTAC rather than helping her to have a chance for recovery while in ICU.

No plan to action and if they do, because I’ve been closely looking at only the last couple of days, then nothing had happened.

Also, her brain has been very good. She understands and is able to talk and is trying to get up but she did get a rash that I had to get the head of the wound care team to get on it because it’s been some time, and I haven’t been seeing any improvement of the wound due to lack of care from the staff.

I need her medical records reviewed and I plan on having a sit-down meeting with them on the plan of care going forward but I told them I need to see improvement on their behalf and their plan of action because it’s more about trying to find a way to put a feeding back, a PEG tube, rather than focusing on her progress.

I’ve been talking to a couple of directors to get help on the right track but we will see and some of the doctors are telling me to hang in there and keep fighting and that management is pushing them. They are counting numbers.

So, if you can review to see whether they might have messed up my mother’s lungs or tracheostomy by them sticking the camera down and do a bronchoscopy in her throat, again, following their own agenda and for use to see how we can move forward with getting it back on track, making sure she gets the help she needs.

Thank you so much.

From, Peter.”

Well, thank you so much Peter for writing in that much great detail. It’s hard to understand that they did a bronchoscopy without your consent. I know your situation, and I don’t understand why they didn’t wait for you to give consent. Like I said, unless it was an emergency, and they couldn’t get hold of you, other than that, especially with that they caused a bleed, that is extremely worrying, extremely concerning.

So, again, do not give consent to the PEG tube under any circumstances. PEG tubes have their time and their place, not for someone in intensive care who’s just had a tracheostomy. PEG tubes are for patients that have high spinal injury, C1, C2, C3, C4. PEG tubes are for patients with cerebral palsy, motor neuron disease, for irreversible conditions.

Your mom’s condition may not be irreversible, and she can have a nasogastric tube instead of a PEG tube. Nasogastric tube can stay in for up to 6 to 12 months. I will point towards a research paper below this video where it clearly says that a PEG tube is causing more harm than a nasogastric tube. Common sense. I’ve looked after patients in intensive care with the nasogastric tube for up to 6 months and that is perfectly fine.

Client Peter here is in the U.S. and for anyone in the U.S. that has their loved one in intensive care, who’s at the risk of going to an LTAC facility, the ICU would always push for a PEG tube to be self-serving. It’s not in the best interest of a patient to have a PEG tube, but it’s in the best interest to stay in ICU until a patient can be weaned off the ventilator and the tracheostomy.

Something that can be achieved in ICU very difficult to be achieved in LTAC because LTACs simply doesn’t have the skills to look after ventilated and tracheostomy patients.

So, I hope that helps you understand how we help our clients and members. We have helped hundreds, if not thousands of clients and members, over the years here at intensivecarehotline.com.

I have worked in critical care nursing for nearly 25 years in three different countries where I worked as a nurse manager for over 5 years. I’ve been consulting and advocating for families in intensive care since 2013 here at intensivecarehotline.com.

I can confidently, confidently say that we have saved many lives with our consulting and advocacy. You can verify that on our testimonial section at intensivecarehotline.com, or you can verify it on our intensivecarehotline.com podcast section where we have done client interviews.

Like I said, we have helped hundreds and thousands of clients and members, that’s why we have built a membership for families of critically ill patients in intensive care. You can become a member if you go to intensivecarehotline.com by clicking on the membership link or if you go to intensivecaresupport.org directly. In the membership, you have access to me and my team, 24 hours a day, in the membership area and via email and we answer all questions intensive care related.

In the membership, you also have exclusive access to 21 e-books and 21 videos that I have personally written and recorded, sharing all my vast intensive care nursing experience with you, our valued member and client.

I also do one-on-one consulting and advocacy over the phone, Zoom, Skype, WhatsApp, whichever medium works best for you. I talk to you and your families directly. I handhold you through this once in a lifetime situation that you simply can’t afford to get wrong. I also talk to doctors and nurses directly. When I talk to doctors and nurses directly, I ask all the questions that you haven’t even considered asking but must be asked when you have a loved one, critically ill in intensive care. I also represent you in family meetings with intensive care teams.

We also do medical record reviews in real time so that you can get a second opinion in real time. We also do medical record reviews after intensive care if you have unanswered questions, if you need closure, or if you are suspecting medical negligence.

All of that, you get at intensivecarehotline.com. Call us on one of the numbers on the top of our website or send us an email to [email protected] with your questions.

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Thank you so much for watching.

This is Patrik Hutzel from intensivecarehotline.com and I will talk to you in a few days.

Take care for now.