My name is Patrik Hutzel from intensivecarehotline.com, and this is another quick tip for families in intensive care.

Here at intensivecarehotline.com , we instantly improve the lives for families of critically ill patients in intensive care so that you can make informed decisions, have peace of mind, control, power and influence — making sure your loved one always gets the best care and treatment, even if you’re not a doctor or a nurse in intensive care.

Today I have a question from Tom who says:

“Hi Patrik.

I was observing all but a few of the ICU therapy sessions, and in none of them did they reduce the air assist below 10 to wean my mom off the ventilator with tracheostomy. This was for the past 7 days, when, as soon as they did so yesterday, my mom breathed for 2.5 hours with O2 the same as in the room. I confronted them this morning, Sunday, and they admitted they had never been below 10 before, except to test Mom at 5. I told them going from 10 to 5 and expecting my mom to perform at 5 without any weaning at progressively lower pressure — 6, 7, and 8 — ensures failure. Their response was that this Sunday morning, before waking Mom up, they performed spontaneous breathing trials, which she failed, apparently, 5 times. So there never was any reason to wean my mom to 5. I have asked for my mom’s vaporizer records for the past week of being off sedatives to see how often she stopped breathing on her own. I will keep a record. Is it still worthwhile with mom’s stops breathing when asleep? Is there any hope? Mom has had a recent worsening of existing stroke injuries that the medical staff say is likely why she now stops breathing. I suppose we could wait longer to see if this goes away, but I doubt it. This is a question for a patient like Mom with stroke damage. 

Please advise.”

Thank you from Tom.

Tom, I can hear your frustration, and you’ve identified something really important here about ventilator weaning protocols that many ICU teams don’t always individualize properly for stroke patients with tracheostomy. Tom, you’re spot on. Going from pressure support 10 down to 5 without gradual weaning through 9, 8, 7, and 6 is setting your mom up for failure. This is basic ventilator weaning protocol that should be individualized, especially for stroke patients who may have neurological breathing control issues.

The fact that your mom breathed for 2.5 hours yesterday with appropriate oxygen saturation — when they actually gave her a chance at lower pressure support — shows she has more capability than they’re giving her credit for. That’s a really positive sign.

Performing spontaneous breathing trials, also known as SBTs, while your mom is asleep is questionable practice at best. Many stroke patients, especially those with brain stem involvement, can have central sleep apnea or reduced respiratory drive during sleep. This doesn’t necessarily mean they can’t be weaned during waking hours when their respiratory drive is stronger. The question isn’t just can she pass an SBT, but what are we doing to build her respiratory muscle strength and endurance gradually.

Here is what you need to do right now:

Number one: Get access to all medical records right now, including ventilator flow sheets showing every pressure support setting, spontaneous breathing trial documentation, arterial blood gases results, sleep studies or apnea monitoring data, stroke imaging and neurology notes about respiratory center involvement, doctor’s notes, nursing notes, physiotherapy notes, lab results, and medication list. Leave no stone unturned.

Number two: I strongly recommend a consulting call with myself or someone at my Intensivecarehotline.com team. We can then have a three-way call with the ICU team to clarify the weaning plan, question their current approach, and advocate for a more gradual, individualized weaning protocol for your mom. During that call, we can question why they’re not following a progressive weaning protocol, why they’re doing SBTs during sleep, and what the actual plan is — whether it’s central apnea versus weakness versus deconditioning.

When I get on a call with you and the team, the dynamics will change in your favor very quickly, because the team will realize that you have someone on your side who understands intensive care inside out — and they can no longer get away with avoiding you and your questions.

Is there hope?  Yes, but we need the right strategy. Your mom breathing for 2.5 hours at lower pressure support is huge. That shows respiratory capability. The issues may be:  Central apnea from stroke — stops breathing during sleep due to brain stem injury.  Respiratory muscle weakness — needs gradual strengthening through proper weaning.

Inconsistent weaning protocol — which is what you’ve observed.

If it’s central sleep apnea from stroke, she might be able to be off the ventilator during the day but needs support at night. Some patients do very well with this approach. If it’s weakness and deconditioning, a proper progressive weaning protocol from 10, 9, 8, 7, 6, 5 — done when she’s awake and alert — could absolutely and most likely will work.

You’re right to consider that the recent worsening of stroke injuries could be affecting her respiratory drive. Here’s what matters: is this acute or stable? If the stroke changes are still evolving, waiting 2 to 4 weeks to see if respiratory function improves as the acute phase resolves is reasonable. However, the ICU team should still be doing gradual weaning attempts during this time — not just testing her at extremes and declaring failure.

What I’m saying next is really important for you to consider.If your mom does need long-term ventilation — whether invasive or non-invasive — or if she needs to keep the tracheostomy because she can’t be fully weaned, check out Intensivecareathome.com because Intensive Care at Home is a game-changing option. We can help you get your mom out of ICU predictably and permanently with proper home ventilation set up. This works for patients who need:

Part-time ventilation, such as nighttime only for central apnea

Full-time non-invasive ventilation

Tracheostomy with ongoing ventilation support

Tracheostomy without ventilation support

Palliative care with comfort-focused ventilation

PEG (Percutaneous Endoscopic Gastrostomy) tube management, suprapubic catheter management, nasogastric tube, and nasojejunostomy tube management

Home TPN (Total Parenteral Nutrition), home IV (intravenous) fluids, home IV antibiotics, home IV magnesium, and home IV potassium infusions

It’s all doable with Intensive Care at Home — because many stroke patients live at home for years with proper ventilation support, whether invasive or non-invasive, with or without a tracheostomy. The quality of life is infinitely better than staying in ICU long-term or in a facility long-term. You keep her out of ICU permanently while she gets the support she needs.

Immediate recommendations:

Document everything. Keep doing what you’re doing — your records of their weaning attempts, or lack thereof, are absolutely crucial. Get all medical records. Request complete ventilator records, neurology assessments, and sleep monitoring data.

Schedule a consulting call with myself. Go to Intensivecarehotline.com, call me on one of the numbers at the top of our website, or schedule a consulting call with me using the link where it says “Schedule Appointment.” We’ll review the records together and then conference with the ICU team to advocate for proper weaning protocols.

Request a formal sleep study. If your mom is having apnea during sleep but breathing well when awake, this needs to be documented properly — not just assumed during failed SBTs.

Ask for a respiratory therapy consultation from a respiratory physician. Specifically request a plan for progressive pressure support weaning, not just jumping from 10 to 5 during waking hours. This can also happen with an intensive care consultant.

Consider the home option. Even if she needs ongoing support, Intensivecareathome.com can get her home with proper equipment and nursing — and we also have our own intensive care consultant if you need input at home from an intensive care consultant.

The bottom line, Tom is, there is hope.  Your mom demonstrated capability by breathing for 2.5 hours at lower support. The ICU team needs to implement a proper gradual weaning protocol during waking hours — not test her to failure during sleep. The stroke factor matters, but it doesn’t automatically mean she can’t be weaned. It means she needs an individualized approach that accounts for possible central apnea versus weakness versus the acute stroke phase.

And remember — even if she needs long-term ventilation support with or without a tracheostomy, that doesn’t mean she needs to stay in ICU forever. Home ventilation with intensivecareathome.com is a realistic, life-changing option. We have plenty of case studies that you can read at intensivecareathome.com.

Don’t give up. You’re advocating brilliantly. Now let’s get the right expertise involved to make sure the ICU team is doing this properly and with the best interests of your mom in mind. Contact me at intensivecarehotline.com and I will help you very fast, as I’ve helped so many families in intensive care over the years.

I have worked in critical care nursing for 25 years in three different countries, where I worked as a nurse manager for over 5 years in intensive care. I have been consulting and advocating for families in intensive care since 2013 here at intensivecarehotline.com. I can very confidently say that we have saved many lives with our consulting and advocacy because of our insights, and you can verify that on our testimonial section.     at intensivecarehotline.com and can verify on our intensive care hotline.com  podcast section, where we have done client interviews.

And because our advice is absolutely life-changing, 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. That’s why we help you to improve your life instantly, making sure you make informed decisions, have peace of mind, control, power, and influence — making sure your loved one gets the best care and treatment always.  You can join a growing number of members and clients that we have helped over the years, saving their loved ones’ lives.

I do one-on-one consulting and advocacy over the phone, Zoom, and 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 cannot afford to get wrong.

When I talk to families directly, I also talk to doctors and nurses directly — asking 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 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 — in case you have unanswered questions, need closure, or are suspecting medical negligence.

We also have a membership for families of critically ill patients in intensive care. You can become a member by going to intensivecarehotline.com and clicking on the membership link, or by going directly to IntensiveCaresupport.org. 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 — all of that will help you to improve the life, make informed decisions, have peace of mind, control, power, and influence, making sure your loved one gets the best care and treatment always.

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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.