When My Trach Tube Cuff Fails. Life with a Vent

In an ideal world, I would always have a spare tracheotomy tube on hand, and it would never be an issue to get a replacement tracheostomy tube. However, things do not always work out as one would hope. #lifewithavent #tracheostomy

About a month ago, I started having issues with my tracheostomy tube. The cuff on my trach tube started deflating. I would wake up in the morning, and the cuff on my trach tube would have very little air in it. I could feel the air from my ventilator escaping from my lungs and out my nose and mouth.

Soon, the trach tube started leaking air faster and faster. I would inflate the cuff on my trach tube before falling asleep. Then, I would wake up in the middle of the night struggling to breathe because my tracheostomy tube cuff had deflated. I kept my syringe close at hand and would quickly inflate the cuff during the night. Over time, I started waking up more and more frequently.

I contacted my respiratory therapist two weeks ago about getting a new tracheostomy tube. Unfortunately, the tracheotomy tube is on backorder. The company has no idea when the tracheostomy tube will be back in stock.

In the meantime, I am trying to make my current tracheostomy tube work. I keep my syringe close at hand so I can inflate my cuff whenever it deflates. I have found if I sleep completely flat on my back, my tracheostomy tube deflates more slowly.

I have spoken to my respiratory therapist, and she does not have any extra tracehcsotmy tubes which will be of use to me. If my cuff completely fails and no longer holds any air, I have been told to go to the emergency department.

Perhaps in larger cities in which hospitals and emergency departments are well stocked with medical equipment, this may be good advice. But, I have found my local hospital and emergency department do not have many respiratory supplies on hand.

During a hospitalization two years ago, the doctor wanted to change out my tracheotomy tube. The hospital did not have any trach tubes which would work for my airways. A tracheotomy tube had to be ordered from a medical supply company. It took a few days before the trach tube arrived. In the meantime, I had to continue using the tracheotomy tube I had.

With this in mind, I know if I go to the emergency department, the probability of the hospital having a tracheotomy tube on hand will be very slim. Either one will have to be ordered and I will have to wait several days for its arrival, or more likely, I will be sent home and told to follow up with my pulmonologist. The only thing my pulmonologist can do is contact my respiratory therapist and ask for a tracheostomy tube to be ordered. He does not have extra tracheostomy tubes at his office.

So, hopefully my tracheotomy tube continues to hold air and hopefully my new tracheostomy tube will soon be on its way to my home. I look forward to getting a good night’s sleep again and to be able to breathe without having my cuff constantly deflate.

[shoshannafachima]

Good to see you.i am shocked that in the u.s. you can only get one trach tube per three months, here in israel you can recieve a few each time or as needed and this applies to all respiratory eccessories such as filters of any type, tubing, hoses etc etc.
I am praying that you recieve as soon as possible the neededsupplies
Hugs smikes and prayers your way
P.s.we have national health and one of the best and most advanced medical systems in the world

[alorodriguez]

you’re so inspiring! your videos have helped me so much. stay strong, you’re amazing♥️

[mr.universe]

I'm praying for you. I have been watching every video you put out as you upload them and i have too say, "Your a ray of sunshine". I wish there was a way to send you help. I to have a perscriptions for medical supplies for incontinence and i know that the pandemic has limited the medical field. You are so strong and inspiring keep up the great work that you do and most important "stay safe"

[rubytheservicedog]

So sorry to hear about your trach issues I hope you can get a replacement soon and your current one stays in working order

[fayrain]

Hope. You. Get. What. You. Need. Soon... Stay. Safe....Stay. To. See. You. Smile.

[MrbidCuriositea]

Any chance you feel.comfortable sharing your tube brand/size/model here? I came to your channel from a FB page and people are wondering how they can help!

[ceceliatorres]

Hello I got a permanent tracheostomy tube. What size do you wear?

[angrychlorox]

Is there anything we can do to help you find one faster ?

[markfancher]

I wish I could give you mine. My doctor say we might try to put in a permanent tube in my throat so we can take out my tracheostomy. Have you heard of this procedure.