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Quick Tip for Families in Intensive Care: My Dad Has Osteomyelitis, a Pressure Sore, Sepsis, Heart Failure & Now ICU Wants to Send Him to LTAC!

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

Today’s tip is about a question that we got, or we had from one of our members as part of our membership for families of critically ill patients in intensive care. And I want to read out the question from the member and obviously also the answer that we are giving them as part of our membership for families of critically ill patients in intensive care, where we can work with you one on one and hone in on the questions that you’re having, and giving you a second opinion and tearing down all the layers of complexity that inevitably happen in intensive care.

We are there to guide you through it because intensive care teams don’t really have the time to explain to you things. They don’t really want to explain things to you because they can be very secretive at times, and they have their own agenda to pursue. Whereas here, we make it all transparent for you.

Now, let me read out a question from the member.

Hi Patrik and Team,

We have been at the ICU for about a week. Dad was admitted to the step-down ICU unit for close monitoring. The hospital determined that dad has mild heart failure and that’s why he has been getting pleural effusions and has had this fluid overload/hydration/dehydration problem for so long. We are very happy that this piece of the puzzle was diagnosed because apparently that’s part of why he has been having so many secretions, which has held up being decannulated.

I.e., decannulation means having a tracheostomy removed.

Also, my understanding is that mild heart failure can be treated with medicine, and it is not terribly dangerous as long as it is treated properly.

They say he has chronic osteomyelitis from his pressure wounds which is causing constant fevers and leukocytosis. We are very skeptical of this diagnosis but aren’t sure what else to ask them to look for. I’ve researched things like vasculitis, tests that endocrinology can do, et cetera, but the doctors always tell me why everything I suggest is not the likely source. We have been playing that game since October last year. They are going to do a CAT scan of his sinuses to see if anything is going on there but said it’s more of a fishing expedition and don’t expect to find anything.

They are going to prescribe a long-term antibiotic to try to keep the fevers and leukocytosis at bay, to treat chronic osteomyelitis. He had a 102 temperature, and 17 white cell count yesterday, two days after the antibiotics were stopped, along with low blood pressure and high heart rate. This is what always happens. And I told them to anticipate it. They didn’t want to jump restarting the antibiotics, but had to in order to make sure septic shock didn’t set in. No germ or bacteria has been found except pseudomonas in the sputum culture, but they believe that it’s a colonization they are commonly seen in patients who are in the hospital for long periods of time.

And I tend to agree that you see a lot of pseudomonas for hospitals for long-term hospital patients. So, it’s not uncommon at all.

They have not once accused dad of having pneumonia, aspiration issues, or any of this being related to his lungs. That is music to our ears because we have always adamantly believed in that.

They previously said antibiotics weren’t indicated since he has been on them for so long, but I think they changed their tune when they didn’t know what else to do. They say a skin flap and the bone biopsy aren’t safe for dad right now because of his nutritional status and other health issues.

We were also able to get accepted to a different LTAC – the one where we were at that never got my dad out of bed, were very difficult to work with (actually pretty downright nasty) and had decided a month into his stay that he would never be decannulated. (I.e., have the tracheostomy removed) and were refusing to allow us to take him home. Why would we want to go back there?

We are praying for the next LTAC, hopefully, not as bad as this one. We are no fools. We know there will be issues as there are everywhere, but if they can get my dad out of bed every day, provide basic therapy, and have decent pulmonologists, that is a very good start. Also, this new LTAC is inside the hospital. It’s a small community hospital, unfortunately, but still a hospital. So, Dad will have access to more types of imaging and specialists if needed.

I looked at dad’s medication list and everything else very closely. One thing that was weird was that as soon as he got to the ER at the hospital, his thick secretions turned to soup. They were clear and extremely runny, and still are. I don’t know why this happened- a miracle? Change in humidity between facilities? He is able to cough a lot more up because they are so thin now. No medicine was changed. They have stopped the mucomyst now, but that was several days into his ICU stay.

Respiratory was asked to comment on how to further reduce secretions and they really have nothing to add except chest physiotherapy, adding saline to the nebulizer, and giving a DuoNeb to promote coughing. We have found that the pulmonologists in each hospital and LTAC have not been helpful.

We anticipate discharge sometime this week and if you have any suggestions or questions you recommend we ask the doctors before we leave, we are all ears. The hospitalists and ID (Infectious Disease) doctors at this hospital are very receptive.

Thank you for your help. 

Well, let’s look at the answer. First off, before I read out the email answer, I just want to make a general comment. Well, you should never go to LTAC. And the hospital can’t force you to go to LTAC. We’ve stopped so many patients going from ICU or from hospitals to LTAC because of our advocacy. And we also, on the other hand, have so many families contact us that have loved ones in and begging us to help them, get them out of LTAC. So, you should never go to LTAC in the first place, and I will talk about how to not go to LTAC in a minute, but let’s just read out our email response to our member.

Thank you so much for the update. Regarding mild heart failure, the doctors probably checked this with an echocardiogram which is an ultrasound of the heart. If they found that the ejection fraction is below 40s or so, it indicates that the heart is not pumping enough blood and may be failing. Another setback is not good, but at least you have one definite condition there to check on with your dad.

So, ejection fraction is basically the contractility of the heart. How strong the heart is beating? And an ejection fraction, less than 40% means that the heart is probably weak and needs treatment.

If the doctor says that your dad has chronic osteomyelitis because of his pressure sores, it means that the pressure sore was not checked or managed properly since it reached the bones already. Initially, the pressure sore starts from the skin and if left untreated, it will go deep into the bones. This is highly preventable with good nutrition, proper antibiotics, physical therapy/mobilization, quality nursing care like frequent turning and keeping the areas dry to prevent the infection.

So, with your dad having osteomyelitis from a pressure sore, that is medical negligence. Also nursing negligence because once again, if your dad had been mobilized, had good nursing care, basic nursing care, this wouldn’t have happened in the first place. So, if I were you, I would remind the hospital that you could potentially sue them for medical negligence here.

Another thing is it says chronic. So, it was there a long time ago, like months, potentially, years, undetected and no treatment was done in LTAC and in the hospital. Can you verify if the pressure sore is down to the bones? Is it smelly? Does it have pus coming out? If yes, then there’s a strong possibility that the diagnosis and treatment are correct. If they repeat the blood culture just to check for bloodstream infection, I strongly believe that infectious disease doctors would check on this as well.

It is good to hear that your dad can cough his secretions easily and the characteristics of the secretions improved. This is progress and great progress. However, clearing secretions can be challenging especially when he is diagnosed with mild heart failure because at some point, fluid keeps pooling in his lungs due to his weak heart. However, it can be managed by proper hydration, not too much or less fluids in his body.

So, it has to be the right balance so that his heart can regulate fluid intake and fluid output. Because if there is too much fluid, the heart gets into overload, and it could end up in pulmonary edema, with water on the lungs. By the same token, if there’s not enough fluid, blood pressure could drop.

I also think that a kidney doctor can evaluate your dad to minimize fluid overload and keep him on his ideal body volume. To add, dealing with secretions through chest physiotherapy, nebulization, bronchodilators and/or glycopyrrolate are great help and should be continued. These are primary care and remedies for pulmonary patients.

Although this is underrated, it’s also important to keep your dad mobilized, get him out of bed to help with the lung strengthening and reconditioning. A chest CT scan can also be suggested to check the lung status.

And I think that has been your dad’s biggest problem that he hasn’t been mobilized properly.

The issue with admission to another LTAC may be related to him being a long-term patient. You can check these links and hopefully it will help you find answers.

Once again with LTAC, do not go to LTAC full stop. The ICU cannot force you to go to LTAC. We have so many horror stories from LTAC and LTACs are designed to save the hospital money and to save the hospital or to get the hospital empty beds. It’s not designed for clinical care or for adequate clinical care, let alone superior clinical care.

I’ve been making videos about this for many years with real case studies.

1. A) How to stop your loved one going from LTAC?
2. B) How to get them out of LTAC?

And I’ve been sharing some pretty dismal stories over the years. Anyway, here are some further resources for you to check in that are on our website:

• Second discharge to LTAC from ICU. The Madness Continues! Quick Tip for Families in Intensive Care.

I’ve made a video about that. Another video that I made a blog post is about:

• How to avoid your loved one leaving ICU and bouncing from LTAC to LTAC? Another Madness Story.

Now another video that I made is:

• Quick tip for families in intensive care: Why there is no clinical support in LTAC?

Number 4,

• Quick tip for families in intensive care: Three signs that ICU is preparing your loved one for LTAC.

And last but not least, another video that I’ve made is:

• Quick tip for families in ICU: How to convince the ICU team to not send your loved one to LTAC?

I’ve put some links below this video where you can access those videos for your help.

Now, if you want us to help you with your loved one in intensive care, potentially helping you to stop the ICU or the hospital sending your loved one to LTAC, we are the place to come to because we have helped countless families in intensive care not to go to LTAC and get proper care and treatment in a hospital. So, you should contact us here at intensivecarehotline.com. If you need help, call us on one of the numbers on the top of our website or email us to [email protected].

Now, if you want to be a member of our membership for families in intensive care, where we work with you one-on-one in a membership area and via email, have a look at intensivecaresupport.org. There, 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.

And I also offer 1:1 consulting and advocacy for families in intensive get over the phone via Zoom, via Skype, via WhatsApp, whichever medium works best for you. I will talk to you and your families directly. I talk to doctors and nurses directly ask all the questions that you haven’t even considered asking but are absolutely critical to ask so that you get peace of mind, control, power and influence and that so that you can make informed decisions when you have a loved one, critically ill in intensive care.

Now, I also represent you in family meetings with intensive care teams. I have been representing countless families in meetings with the intensive care team. Once again, making sure you’ve got professional representation, you know what questions to ask, and you have a clinician on your team that speaks the secret intensive care language and can interpret everything for you and making sure you get the best care and treatment for your loved one.

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 simply suspecting medical negligence, contact us at intensivecarehotline.com.

Now, if you are finding my videos valuable subscribe to my YouTube channel, share the video with your friends and families. Click the like button, click the notification bell. Comment below what you want to see next or what questions and insights you have from this video.

Thanks for watching.

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

Take care for now.