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

So, today’s tip is an email from Catherine who says,

“Hi Patrik,

My husband is in an ICU. He was admitted for respiratory failure after having flu and pneumonia. Consequently, his kidneys have taken a punch. He’s diabetic and he is receiving dialysis.

The failed bronchoscopy attempt ended him on the ventilator. He finally had the bronchoscopy and has shown difficulty in the weaning process. After 10 days, we were encouraged to get the tracheostomy as it’s easier to wean him off the ventilator. We agreed.

However, the PEG (Percutaneous Endoscopic Gastrostomy) tube has been their center of attention. My husband had gastric bypass surgery due to having gastroparesis. They bypassed the portion of the stomach that wasn’t working. No surgeon will perform the PEG tube procedure. So, it has become a real sore spot between family and staff. His level of care in the ICU has now suffered substantially.

He’s unable to use his arms hands and legs at this time. He’s still extremely weak. The other night it was cold, the temperature was set in his room at 62 °F and no one covered him overnight. He tried to get the staff attention. No one came into his room.

In fact, I called at 6 a.m. to check on him and the nurse looked in said he was asleep when the 7 a.m. shift change came in. She said she could not get a temperature on him regularly. It was 92.4 °F. He was lethargic.

Blood pressure low and heart rate low after hours under a warming blanket, his vital signs returned to his baseline normally. He told us he was freezing all night. We went back over the medical records to see what his last temperature had been before it fell, and we found his temperature had not been documented for days. Definitely, a totally different level of care than we when we first entered the ICU.

We feel as if we are being pushed or punished over the PEG issue.”

Well, Catherine first off, you’re making the right decisions here by not agreeing to a PEG. What I don’t quite understand from your email is if your husband had a tracheostomy or not. The timelines are also not clear to me as has it been a week? Has it been two weeks? Has it been four weeks? If it has been four weeks of him not having a tracheostomy and he can’t be weaned off the ventilator, then he should have a tracheostomy, but he should have no PEG.

So, the biggest challenge for families in intensive care is always that they don’t know what they don’t know. They don’t know what to look for. They don’t know what questions to ask. They don’t know their rights and they don’t know how to manage doctors and nurses in intensive care. I think to a degree that is what you’re dealing with.

So, a tracheostomy has its time and its place when someone can’t be weaned off a ventilator. I think in your husband’s situation, assuming it’s been more than two weeks, once again, that’s not clear from your email, then you should agree to a tracheostomy.

Obviously, Catherine writes from the U.S., I should also mention that Catherine writes in from the U.S. And, in the U.S., the risk is that when someone has a tracheostomy and a PEG tube, that patients are being sent to LTAC (Long Term Acute Care) as quickly as possible.

I’ve made countless videos here that LTAC is not a good place to go. It is as a matter of fact, the wrong place to go when you have a loved one in ICU. Do not go to LTAC. That’s the take home if you take nothing away from this video, but do not go or agree to let your loved one go to LTAC under any circumstances.

Now, I’m just looking at your email again “After 10 days, we were encouraged to get the tracheostomy.” So, he’s got the tracheostomy. Good. So, do not give consent to a PEG. If you feel like you are being punished, well, I tell you what I would do. I would make that known with the intensive care team and I would make that known with hospital executive.

We are helping our clients all the time to write letters and emails to hospital executives with complaints in situations like that with really good outcomes.

Now, he’s in the best place. Let’s look at the best-case scenario here. He’s in the best place to be weaned off the ventilator because in ICU, they have all the resources and know-how and knowledge how to wean someone off a ventilator and a tracheostomy. They don’t have that at LTAC.

Let me repeat that. He’s in the right place to be weaned off the ventilator and the tracheostomy. LTACs do not have that ability to wean patients off the ventilator and the tracheostomy. They are not even better versions of nursing homes. Imagine your husband in such a vulnerable situation would go to a nursing home that is shear and utter madness but is what happens all across the United States on a day-by-day basis. Patients in LTAC die and wither away or after 30 days of no progress. They are being sent off to a skilled nursing facility. Going from bad to worse.

So, by you not giving consent, in most cases, to a PEG tube, you’re putting the backstop on to not have your husband go to LTAC. So, you’ve done all the right things here. So well done. Give yourself a pat on the shoulder. It’s much easier dealing with hospital executives now and dealing with intensive care teams than it is dealing with the incompetence of LTACs.

So, you are still in a good spot. Keep the pressure on. Let us look at the medical records and then we can guide you from there. Your husband, for all you know, might be fairly close of coming off the ventilator.  You just haven’t got all the details.

Once again, the biggest challenge for families in intensive care that they don’t know what they don’t know. They don’t know what to look for. They don’t know what questions to ask. They don’t know their rights and they don’t know how to manage doctors and nurses in intensive care.

You should also shift your focus from, are you being punished for not giving consent? Shift your focus away from that.  Don’t worry about it. Just keep pushing on with what you know. Your husband wants, needs, and deserves which is being weaned off the ventilator, leaving intensive care alive, and not going to an LTAC. Just shift your focus.

We give second opinions all the time here at intensivecarehotline.com. We look at the medical records and we dissect everything for you and saying, “Yeah, this is what they should be doing next.” We lay the path for you and then you can hold them accountable. Don’t be shy holding them accountable. That is also a big challenge for families in intensive care. They’re scared and intimidated, asking for what they want.

So, as you’re well aware, and by now, this is a once in a lifetime situation that you can’t get wrong. It’s a high-stakes situation that you can’t afford to get wrong. You need to act accordingly.

I’ve worked in critical care 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 all over the world since 2013 here at intensivecarehotline.com.

I can very confidently say that we have saved many lives as part of our consulting and advocacy. You can verify that on our testimonial section as well as some podcast interviews with some of our clients.

That’s also why we created a membership for families of critically ill patients in intensive care. You can become a member if you have a loved one in intensive care if you go to intensivecarehotline.com, click on the membership link or go to intensivecaresupport.org directly. In the membership, you have access to me and my team, 24 hours a day, in a 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 specifically designed, written, and recorded for our members that will help you to make informed decisions, have peace of mind, control, power, and influence, making sure your loved one gets best care and treatment.

I also offer one-on-one consulting and advocacy over the phone, Skype, Zoom, WhatsApp, whichever medium works best for you. I talk to you and your families directly. I help you understand how to get results, how to get best care and treatment when you have a loved one in critically ill in intensive care.

I also talk to doctors and nurses directly on your behalf if that’s what you want me to do once again, getting results, very good results for our clients just by talking to them, asking the right questions, holding them accountable, making sure you make informed decisions, have peace of mind, control, power, and influence, making sure your loved one gets best care and treatment. You will see that when I talk to doctors directly, that the dynamics would change in your favor. They have nowhere to hide.

I also offer representing you in family meetings with intensive care teams. I’ve been in hundreds of them, and I will help you to get results there as well.

We also offer medical record reviews in real-time so that you can get a second opinion in real time. We also offer 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 an email to [email protected] with your questions.

If you like my videos, subscribe to my YouTube channel for regular updates for families in intensive care, click the like button, click the notification bell, share the video with your friends and families, and comment below what you want to see next, what questions and insights you have from the videos.

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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.