Living with a trach (tracheostomy), need advice.

Posted by mindyt @mindyt, Oct 30, 2021

My situation is when carrying things, walking upstairs (unspecific other times also) it’s like I can’t get enough air, I’m breathing but it’s like not enough for the exercise, I almost pass out, I feel like I can’t breath … I have learned to stay calm and pull out the tube in my trach - sometimes this gives me the breath I need but once in a while it takes min before I get relief. I have mentioned it to my local ENT that scopes me … he is so rude and says it’s in my head, so it is not in my head but there is my question is anyone else experiencing this and have you an idea as to what happens here? Has anyone tried to get a larger trach for resolution?

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neetneet | @neetneet | Apr 7, 2023

Greetings Sue: Yes I am quite anxious but I am trying to get as much knowledge as possible so that I can move away from acting on emotions and make thoughtful decisions. I just asked the respiratory therapist about resuming capping and she responded that the speech therapist is in charge of that. I got confused because it was one of the other respiratory therapist who put in the cap (he went for 13hours until his secretions were too thick for him to handle). When the speech therapist came in of course she had no idea about capping but talked about getting him off of the feeding tube and when she gave him ice he was able to handle 2 pieces of ice and she stated his throat muscles are getting stronger. So it seems like it is going to take more time but not at this location--that it what I am beginning to sense. His last fever was 2 days ago and I think he has to be cleared at least for 2 weeks before another site would accept him. I might be mistaken. He no longer has a fever or is on any antibiotics. But I am feeling that they have met one goal of getting him off the ventilator (it has been 3 weeks) and that might be it. PT OT and Speech is only offered once a week which is not enough to bring about changes in swallowing. Any locations for him would be off a distance in other states. I would not be able to visit with him everyday to see him and how he is being cared for. I am leaning towards getting more expert advice as to next steps. I appreciate all of the posts for they have been very helpful and a true source of comfort when trying to formulate moves and next steps. I appreciate all that has been done and have the highest respect for those who work in the medical field. I myself and my husband were in the service industry. We both did 40 years each in teaching and we are still working to help schools obtain employees to educate the children in our local school communities. I noticed that you said Medicare will pay as long as progress is being made. Are there established time frames for progress? Best always and much thanks.