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

So, I’ve got a question today from Maron who says “My son who’s 25 has sickle cell anemia. He’s been intubated in ICU for a couple of weeks now. He’s now having a tracheostomy and lung lesions. What is the survival rate?”

Now, Maron, that’s a great question to ask. And no one has a crystal ball, but I can tell you from experience, after having worked in ICU for over 20 years in three different countries, that patients with sickle cell anemia that end up with the tracheostomy in ICU, I would say have a pretty good survival rate. Because otherwise, the ICU team would have suggested not to do the tracheostomy in the first place.

Now, lung lesions are not a great thing to have in combination with sickle cell anemia, but you got to work out now with the ICU team. How are they treating the sickle cell anemia? Do they need to do a bone marrow transplant? Do they treat it with certain specific drugs for the sickle cell anemia? Are they giving blood transfusions such as red blood cells, platelets, fresh frozen plasma (FFPs), or anything else?

So, you really got to dive down deep in terms of how are the oncologists or the hematologists treating the sickle cell anemia. In terms of ventilation and with the lung lesions, again, that is certainly going to be challenging and might be an obstacle to wean your son off the ventilator. But what he’s got going for him is simply his age, he’s 25. And they got to keep taking the sedation off once he has the tracheostomy. And then they got to look at weaning him off the ventilator, step by step and getting him stronger, step by step.

Again, I would suggest that if they didn’t feel like there’s hope and there’s a way for him to survive, that they wouldn’t have done the tracheostomy in the first place. At the end of the day, it’s your choice, of course. If you are the power of attorney, what do you want to have done next for your son? But you should never give up hope. You should sit down with the ICU team, work out what’s their plan. How do they want to wean him off the ventilator? What is the oncologist or the hematologist saying how to treat the underlying disease? And then go from there.

And what we can do here at Intensive Care Hotline is really look at medical records with you. We can talk to the hematologist, oncologist, and to the ICU team with you and ask all the right questions, dig down deeper.

Intensive care is such a highly specialized area. If you don’t know the right questions to ask, you’ll be fighting an uphill battle because the biggest challenge for families in intensive care is simply 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. And I think that’s exactly where you’re at, at the moment.

So that is my quick tip for today.

If you have a loved one in intensive care, go to intensivecarehotline.com and call us on one of the numbers on the top of our website, or send us an email to [email protected].

Also, check out our membership for families in intensive care at intensivecaresupport.org.

If you need a medical record review while your loved one is in ICU or after ICU, contact us as well.

Also like this video, subscribe to my YouTube channel  for updates for families in intensive care. Share this video with your friends and families, comment below what you want to see next or what questions you have, and click the notification bell.

Thanks for watching.

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