Tracheotomy recovery time

Samkl

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I’ve read somewhere that the recovery time for a tracheotomy with ventilation is 4-5 months in hospital, and that within a month you could lose the function you do have (if your breathing is the first thing affected), because of inactivity. Does this sound right?
 

Nikki J

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No. A trach especially if planned and not emergent is a quick procedure. There is no reason for a prolonged hospitalization due to a trach. There may be other issues but if not after adjusting vent settings and teaching the caregiver the person should go home.
 

Samkl

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Thanks Nikki. What about functional decline due to inactivity, rather than neuronal death? I know progression won’t be stopped by supporting breathing, but is there anyone on the forum who still has reasonable function apart from breathing who opted for trach/vent?
 

Nikki J

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I can’t think of anyone. There are successfully vented people here but I don’t believe respiratory onset

there shouldn’t be prolonged inactivity though. In your scenario with primary respiratory failure there is no reason why after a brief recuperation from the procedure they couldn’t resume activity ( better than before as respiratory compromise limits mobility). I have known vented people ( not PALS) up and walking
 

Samkl

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Do these people have portable ventilation? I thought once you were ventilated you have to stay put.
 

affected

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A member here Diane from ALS from both sides has been trached a very long time and tho paralysed she is up in her PWC all day.
 

lgelb

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Same as using for noninvasive ventilation, you can use a Trilogy, Astral or other vent with an internal battery, that sits on the back of a wheelchair or scooter. The machine and battery are the same, just used with a trach instead of a mask. No reason to have to stay put. But need someone nearby and summonable in case there is need.
 

Jay Q

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I was trached in June and spent nine days total in the hospital. The first half was primarily recovery the second was training and adjusting trilogy settings for the right support. Prior to the procedure I was wheelchair bound having lost the strength to walk with a rollator a year before. Prior to trach I was on trilogy with nasal canula by day and mask at night. During day, trilogy attached to back of wheelchair. The same arrangement now that I am trached. I did feel weaker for the first month or so after trach. For example, I felt unstable during transfers. That feeling has subsided considerably in the months since. I chalk that up to the surgery and laying idle in the hospital bed. There is considerable adjustment to life with a trach. Primarily with need for regular suctioning and related care along with presence of caregiver. Hope this helps.
 

Samkl

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Thanks Jay, I am profoundly grateful for your input.
 

Samkl

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Thanks, Tillie x
 

Samkl

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Thanks Laurie x
 

Samkl

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Thanks, as always, Nikki x
 

Kim Ordile

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Your situation is unique since you have the ability to move around on your own. Maybe you could get a wheeled stand like they use in the hospital to hold ventilator device ? That way you could just wheel it around with you. I was only in the hospital for 7 days. I have had a great experience and I am so thankful to be able to have more time with my family and friends. I am able to get out and about with my ventilator attached to my power wheelchair
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Samkl

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Thanks Kim. I’m not the PALS, but I will most assuredly pass on you helpful insight. X
 
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