I want to start by emphasizing one important point: no two patients are alike. What may be easy for one person could feel impossible for another. No one can truly say, “You can’t handle this on your own” or “You need to go to a skilled nursing facility” until they understand your unique situation and capabilities.
Remember, healthcare institutions have a responsibility to ensure patients are safe when they’re discharged. Because it’s often impossible to predict how well a patient will manage with a tracheostomy, they tend to err on the side of caution. That said, you are the best judge of what works for you.
The following tips come from my own experience — just one patient’s journey. However, I’ve had the advantage of seeing things both as a patient and from a provider’s perspective. I’ll walk you through my thoughts, starting with Day 1, when I woke up in the ICU.
Day 1: Ouch.
Communicating
My team informed me that it was unlikely I’d be able to speak for at least six months after my trach surgery, if at all. So, I made sure to prepare ahead of time by installing a text-to-speech app on my phone and laptop. Since my trach was cuffed and I was on a ventilator, communication with my healthcare team was essential.
TIP: Find a way to communicate after surgery. There are many tools out there, so if you can prepare in advance, it’ll make the process smoother when the time comes.
TIP: I’ve been hospitalized several times over the past three years and have my cuff up and on a ventilator so it’s impossible to speak. In every single instance, when I push the call button, the people at the desk will come over the intercom with “Can I help you?”. REALLY? Write a note, have a friend there; but however you need to get the message across to your nurse and your care team…remind them that you are not able to answer when they ask you what you need when you press the call button.
Fear & Pain
Although I have a high pain tolerance, I won’t lie — the pain was real. That being said, I never felt it was severe enough to require pain medication.
What bothered me more than the pain itself was the overwhelming feeling of choking. The plastic in my throat combined with all the mucus and blood made it feel like I was drowning. And with the uncertainty around the right ventilator settings, I constantly felt “air hunger.” It was nerve-wracking, but I kept an eye on my oxygen saturation, which helped reassure me that I was getting good ventilation.
TIP: Familiarize yourself with oxygen saturation levels and what’s considered normal. In general, anything above 88% is acceptable, and knowing this can help ease your concerns.
Suctioning
Day 1 = Suction, suction, suction. The first day is the hardest, but it gets easier with time. After surgery, you’ll have bleeding and a large foreign object in your throat, which your body tries to clear using mucus. If you can cough and you don’t have a cuffed trach, you may be able to clear most of it on your own. But if your trach is cuffed, or you’re not able to cough effectively, you’ll need suctioning to clear the airway.
TIP: As soon as possible, learn how to suction on your own. In my experience, respiratory therapists vary widely in skill and understanding of trach care. Unfortunately, not all are properly trained in suctioning techniques, so it’s crucial you feel confident doing it yourself.
Suctioning is more complicated than it might seem. Once you learn the ropes, it’s easy — but there’s definitely a learning curve. You’ll have a lot of new things to navigate on Day 1, so don’t be discouraged if it takes time to get the hang of it.
Stoma Pain
The first six weeks post-surgery are especially tough. The stoma (the hole in your neck where the trach sits) will be sore as it heals. Even turning over in bed can send sharp pain shooting through that area, not to mention the discomfort from rough handling by some healthcare providers who may treat the trach tube like a garden hose.
I don’t blame them entirely; they’re used to working with patients whose stomas are well-healed. But remember, it hurts, and don’t be afraid to speak up.
TIP: Don’t hesitate to tell the staff when something hurts. You’re in a vulnerable position, and it’s OK to ask for gentle handling or adjustments.
Final Thoughts
The good news is that there is only one Day 1. It can be tough, but remember — it’s temporary. Don’t base your future plans or expectations on the first day alone. I don’t think anyone, on Day 1, is thinking, “This is easy, and I can do this at home.” But with time, patience, and support, you’ll find that it gets easier. You can do this.