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

Today, I have an email from Sonia who says,

“Hi Patrik,

I have my 9-month-old baby girl in intensive care. She had four failed extubations. So, she had to have a tracheostomy and has been stuck on a ventilator since May last year. Her respiratory rate has been high since birth. When she’s asleep, it’s between 50 to 60 breaths per minute, but when she’s awake, it’s anything between 70 to 90 breaths per minute. She currently has a PEEP (Positive End -Expiratory Pressure) of 10, and pressure control and pressure support of 6. Do you have any advice on how we are able to wean her off? She has no airway issues; the CT (Computed Tomography) scan was okay. The only thing that the doctor says is that her lung volume is less than a baby her age. Can you please advise?”

Well, that’s a great question, Sonia.

So, number of observations there, if your baby is nine months old and she had four failed extubations and she now has a tracheostomy, one thing you haven’t said is, was she prematurely born? Because we have seen many babies that are prematurely born and then they are ventilator-dependent, but I’ll come back to the prematurely born babies in a minute.

Let’s just quick look what else is happening here. If they can’t wean her off the ventilator, similar to adults, get rid of all sedation, opiates, and mobilize. It’s more difficult to do breathing exercises with kids because they may or may not be able to follow those instructions. However, it’s not dissimilar to kids; you reduce speed, you reduce pressure, and support. You change from a controlled mode to a CPAP (Continuous Positive Airway Pressure) or a pressure support mode and get your baby to breathe more and more spontaneously. Then hopefully, she can move towards having time off the ventilator, very similar to adults.

Now, if she has decreased lung volume, why is that? I don’t know.  Does she have a pneumothorax? Is she a prematurely born baby i.e., surfactant of the lungs is not fully developed yet because that is what often gets premature babies off the ventilator. Eventually, the surfactant develops over time.

Next, if she has decreased lung volumes. Does she have excessive secretions? There are some other mechanical obstructions in the lung. First one that comes to mind is, of course, secretions. Next one that comes to mind, God forbid, is a tumor. I would hope that it is not the case, but just to get you thinking that there could be a mechanical obstruction as well. Next, if lung volume stays decreased, often a bronchoscopy is being done to have a look at what’s happening there in the lungs i.e., a camera is being put down in the lungs through the tracheostomy. Has that been done?

So really, it’s not dissimilar to weaning an adult off the ventilator and the tracheostomy.  So, the question is, why does your child have a decreased lung volume? Is it just not developed? Or is there a mechanical obstruction?

The other thing that you haven’t shared is, is she on a controlled ventilation mode i.e., is the ventilator doing most of the breathing? Or is she now in a mode where she needs to trigger all the breaths like CPAP or pressure support? That would be good to know again.

The biggest challenge for families in intensive care is 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, that is exactly one of the challenges you are having here.

Now, if mechanical ventilation weaning fails, Sonia, the best next step is Intensive Care at Home. Your daughter should not be in ICU for nine months. I can see from the timing of your email that she’s been in ICU now for nine months. She should go home with Intensive Care at Home.

So, go and check out Intensive Care at Home where we are specialized to send intensive care nurses and pediatric intensive care nurses into the home, predominantly for long-term ventilation and tracheostomy weaning. So, you are probably living in ICU and that is not a good situation. So, go and check out intensivecareathome.com.

Because we get so many questions for families with critically ill patients in intensive care here at intensivecarehotline.com, that’s why we created a membership for families of critically ill patients in intensive care and you can get access and become a member by going to intensivecarehotline.com by clicking on the membership link. In the membership, you have access to me and my team, 24 hours a day, via email, and we answer all questions intensive care related. You can also go to intensivecaresupport.org directly to get access to our membership. In the membership, you also get a library of 21 eBooks and 21 videos that are specifically written and recorded for families of critically ill patients in intensive care that help you to make informed decisions, have peace of mind, control, power, and influence.

I have worked in critical care/intensive care for nearly 25 years in three different countries where I also worked as a nurse manager for over 5 years. I have been consulting and advocating for families in intensive care since 2013 here at intensivecarehotline.com. We have saved lives with our consulting and advocacy, and it’s not a slightest hint of exaggeration.

Have a look at our testimonials and have a look at our podcast section, where we have client interviews as well.

Because of that, I also offer one-on-one consulting advocacy over the phone, Skype, Zoom, WhatsApp, whichever medium works best for you. I talk to you and your families directly, and that will make all the difference for you and your family once you understand more about intensive care, and how to navigate the territory, you are in a much better position to make informed decisions, have peace of mind, control, power, and influence. I also talk to doctors and nurses directly, with you or on your behalf, and once again, you will see that the dynamics will change in your favor in no time once the intensive care team knows you have someone on your team that speaks their language and understands intensive care inside out just as they do, but come from a family and patient perspective, not from a hospital perspective.

We also offer medical record reviews in real time so that you can get a second opinion in real time, so, once again, that you make informed decisions have peace of mind, control, power, and influence. We also offer medical record reviews after intensive care if you have unanswered questions, if you need closure, or if you are simply suspecting medical negligence.

I also represent you in family meetings with intensive care teams that, once again, making sure your loved one gets best care and treatment and making sure you make informed decisions, have peace of mind, control, power, and influence.

All of that you get at the intensivecarehotline.com. Call us on one of the numbers on the top of our website, or simply send us an email to support@intensivecarehotline.com with your comments and 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, comment below what you want to see next, what questions and insights you have from this video, and share the video with your friends and families.

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.

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