Clarification to the video: Some hospitals require patients who use ventilators to be in the intensive care unit (ICU). However, the hospital where this situation occurred does NOT require people who use ventilators to be in the ICU. I have been to this hospital before and am usually placed in a regular hospital room (unless I am critically ill and my medical issue requires ICU level care). To understand where the disagreement occurred regarding me needing an ICU room, let me explain the bed assigning process in this hospital. In the hospital, there is a hospital employee who is responsible for assigning beds to patients. This person, who I will call the bed assigner, collects information from every hospital floor about which beds in the hospital are available. When a bed becomes available, the bed assigner looks at the list of people who need a bed. When a match is made, the bed assigner reviews the information about the patient to make sure the correct type of bed is being assigned. For example, if the doctor requests the patient receive an ICU bed, there must be justification for this need. All bed assignments must agree with hospital policy. For example, if hospital policy states a person with a certain medical condition needs a certain type of hospital room, the bed assigner MUST assign a bed based on the hospital policy, even if it disagrees with the doctor’s request. Once the patient is approved for the bed, the patient’s information is sent to the charge nurse in the unit. The charge nurse has the responsibility to assign the patient a bed and a nurse. If the charge nurse refuses the patient, the patient remains on the bed wait list. Then, the next person who is eligible for that bed is assigned to the unit. Here is where the issue arose. The doctors stated I needed a regular hospital bed. The bed assigner, after reviewing my medical case and hospital policy, also agreed I needed a regular hospital bed. When a regular bed became available, I was assigned to that unit. The charge nurse accepted me as a patient, assigned me a bed and assigned me a nurse. Upon arriving on the unit, the nurse informed me she refused to be my nurse because I required too much care. The charge nurse was contacted and agreed with her nurse. I was pulled from that unit and placed back on the hospital bed wait list. The charge nurse placed a block on my chart which prevented me from being accepted by any other regular hospital unit. The only units which she said could accept me as a patient where the ICUs. There was no evidence in my medical chart that I needed ICU level care. Moreover, hospital policy stated I could be in a regular hospital bed. Thus, the bed assigner kept my bed status as needing a regular hospital bed. Now, since no charge nurse on a regular hospital bed unit would accept me as a patient, I remained indefinitely on the hospital bed wait list and spent my hospitalization in the emergency department.

I recently started taking 7% hypertonic saline in a nebulizer for BOS. It is uncomfortable but reduces coughing a lot especially while walking or exercising.

I was going to say, "You mentioning it is harder to speak: have you thought about using an AAC device when communicating with your mom, or out in public?" However, watching the whole video and seeing you switched back to 7mm size tube, I guess this is not a consideration at this time; maybe in the future.

Why did this ENT doc who'd never seen you before think she knew better than everyone who had treated you over several years what size trache tube you needed?

Hey chronic illness warrior that was a great video it was very informative. Maybe you can do a video on why end up on a vent or what happens leading to the surgery to get the trach. Sending 🥄🥄🥄🥄🥄

Nice video

You are always interesting, wishing you the best

Hi my friend I’m definitely praying for you. Ouch that sounded painful. I just wanna let you know that my nephew still watches your channel all the time and he is now in rehab. He’s able to breathe for 25 minutes on his own. Which we never thought would happen, but he can’t. He’s also now eating on his own. He did pass the test. I’m definitely praying for you, my friend and stay strong. I meant we never thought he could do that but he can. I knew he could, but his family wasn’t sure when he gets at a certain point we’re hoping to bring him home vent and all. We’re hoping that he’ll come here because that way we can watch him closely. Definitely praying for you my friend. Stay strong.

It's very dangerous to switch to a bigger size. The stoma adapts to the size you have been wearing for such a long time and it should not be stretched further. You were lucky you didn't damage your trachea.

What size is that

Bivona does not have inner cannulas in the U.S. market. DIC tubes have been phased out. They do not offer these tubes, just BluSelect for PVC and Bivona silicone.

This can be very confusing for clinicians. Stick with ISO mm sized tubes.

I am a pediatric home nurse. Most of my little patients are on vents…. Most are terminal. You, my friend, are blessed and just as much a blessing!! I am so very sorry your dream of becoming a doctor is vanishing, but God has led you to a greater calling. Not only are you teaching the physical issues with tracks and vents, you are showing that life doesn’t end with a trach and vent, it is just a curve in the road. I love you, your videos and your videos and, your perseverance!

My late husband had complex medical problems also with a trachy. I had nurses,that came daily but I looked after him 20 hours a day.With 2 nights of a nurse sleep over.Every hospital visit ended up days in the Emergency department because no ward wanted to take a trachy.

You are amazing

In our hospital, a person on a ventilator is required to be in the ICU. And, the hospital is responsible for that pt’s care - even if it’s something they manage at home. I can’t just bring my medications from home and self administer them, for example. So, at our hospital, they would not allow you to self manage your vent care. They might allow you to do your own trach care - supervised by staff - but ultimately they are responsible. so, if you got a mucous plug for example or an infection, they would be responsible if anything happened to you. I understand your point of view that this is your regular self-care, but I also understand the point of view that the hospital is responsible for you while you’re in their care. I’m sorry it’s so complicated. 😢

wowyou almost died yup they say its anxiety alot i have emphesema

It seems what your explaining is hospice is end of life care, without things that would extend life, and being on a vent and/or feeding tube/tpn conflicts with that. Sorry to hear about your friend. You seem to have a good attitude about your life.

I like what you said about, ' (you) could be angry or upset, but are choosing to educate others through videos.' Take care!

The fact that you were banned from the hospital room *doesn’t not make any sense* Hospitals are suppose to care Like I said, what kind of hospital is this? You were being screwed up in the hospital still by lousy nurses and doctors

I stumbled upon your videos very recently and have appreciated listening to you and your perspective. I used to be a CNA in long-term care and hospice (your "why I'll never go on hospice" video is how I found you) and now work in clinical research, so I feel I have some "insider," but hopefully non-biased, information to add. Over time, and especially over the pandemic, hospital nursing ratios have been increased. There are many reasons for this: overestimation on time saving from new technology, an overall shortage of skilled nurses willing to work bedside, private equity taking over many hospitals and trying to increase profits, greater burden of disease in the population overall, etc. Then we add onto this that nurses have also now been criminally prosecuted for medical errors they've made, rather than looking at the system that led to those human errors as a way of prevention. Now there is an essential part of the healthcare system stretched to their limits and scared. I can understand that nurse's fear of having a seemingly more complex and higher risk patient to care for. Yes she should have listened, but she also should not have been put into a position where, even if your level of care was slightly higher than what the ED nurse said, she would not have been able to handle the extra load. The system is broken and we need to advocate for both education (which you do so wonderfully) and changes to benefit everyone.

My mother who has ALS is on ventilator and also feeding tube has ran into this problem several times. Because of the vent she would have to be in ICU. Once when the ambulance was taking her to the hospital the driver called the hospital to say that they were bringing a vent patient. The hospital told the driver to not bring her there. Just one of many issues we've ran into with service. It's sad. No help for those who need it the most.

OMG. How crazy. And funny video.

I think her cruise videos are on her other channel

Sorry to hear about your experience. Unfortunately being human, there are people who wear uniforms but it is not service above self but the self preservation comes first for these people. The Florence Nightingale oath just tossed into the drain...sighh. anyway hope things worked out eventually?

That's so annoying my friend. Please stay well ❤

We had a similar situation with my trach 8 year old

They really get freaked out by us, don't they?

That's ridiculous they shouldn't have banned you from your hospital room just because you're on a ventilator. Sending spoons so you feel better. My chronic illness warrior❤

That's awful that you felt like that. But I'm glad you are in a better place today! Have a good rest of the weekend! 🥰🐿💙

This video is Out of sync (I must protest), if you’re on a Cruise than all videos should be cruise-related - Anxiously awaiting Part three of your Cruise - not something that happened “several years a-go” 😅😅, hope you’re having a Great time.

You are awesome ❤❤❤❤

Thank you so much for being the light you are❤

they LOVE taking their own Ignorance out in poor quality care and actual ATTACKS on ventilated people

Im so sorry to hear about your experience. I hope this wont happen again..

Thanks for sharing

I'm glad you are better. Love you're better

I am at a 31 and was told it is not high, is that true?

I have two size of the HME I'm 30 I used the smaller size was wondering why I get dry so quick the bigger one feels wayyy better! I thought it was because of smaller air flow or something with the smaller size one LOL thankyou for the information!

Here is how it is going for me in two weeks I had seen primary care doctor twice and 1 urgent care visit and been discharged twice from the hospital saying I had viral tonsillitis which was likely since I was in weak shape but I knew something was more wrong. I was admitted the third time after losing 7 pounds in a week even though I had only been eating 300 calories less. I have lost 21 pounds in a year from my all time heaviest weight of 130 and I’m not that short at 5ft 10in. I was admitted in the hospital the nurse was really heavy she ran me into a room and I had first an ultrasound nothing appeared then a ct scan without contrast and ct scan with contrast which showed SMA syndrome and a Nurse practitioner knew what it was but never expected to see it and she showed her colleagues and they were in shock and they brought 5 specialists of the same speciality and they were all in 100 percent agreement that this is SMA. I also, had mri scan with and without contrast and it showed up on those tests too. The worst part for me is that I can’t vomit easily so I constantly have nausea and it just sits and the cramping is agonizing and I can tolerate a lot of pain and I have tried the strongest anti nausea medicine and even that makes me nauseous. The problem too is my kidneys really work extremely well so I have to urinate a lot which would leads to dehydration normally but this makes this condition much harder because I’m drinking 5 liters of liquid a day and close to dying of dehydration according to lab tests and I was only given two bags of saline over a 3 day hospital stay. I been fortunate I can still tolerate eating normal food but with limitations and I cannot eat lunch so I’m forced to eat two large meals to keep up with my calorie goals which is 3,000 so I eat a 1,500 calorie breakfast and a 1,500 calorie dinner and in the meantime I have not only deal with the usual symptoms but hypoglycemia as well.

Thank you. God bless you. I pray healing over you in the name of the father, son, and holy ghost.

whats the difference bettwen oxgen and a ventt i use oxgen

A little something extra in the TPN that day ? ❤❤

Woah 2:34 what on earth! Hugs hugs hugs!

Can i ask if your breathing is better now? Am i seeing correctly that your lips are in cyanation? I hope you are doing better ❤

😂😂😂 You’re so crazy 😂😂😂

Your explanations are excellent and very helpful. I also watched the suction part closely and I have a question to you. Did you ever try a tracheostomy cannula with suction port? This helps to remove secretion from above the cuff in regular intervals. We have designed a special portable aspiration device for automated subglottic suctioning. It can be set to aspirate for 10 to 60 seconds with 3 to 60 minutes pause time. Much less than the usual recommended 4 hours interval. Such short suction intervals prevent secretion leaking into the lung our out of the stoma. Reduces risk of lung infection and deep suctioning from the bronchial area. If I could raise your interest pls watch below videos on KZfaq: kzfaq.info/get/bejne/m9qPasxq0M7aZ30.html kzfaq.info/get/bejne/mrOBm7t-0JaoqoE.html

SLP here, and nobody teaches this better than you. Thank you for helping so many. I'll be sure to pass on your link.

Super informative! Ty! ❤

Wait, how are you doing?