by In March 2022 I had to go to emergency room because I could not breathe and the doctor performed a tracheostomy. Three years and six months after I was diagnosed. I’ve been back to icu two times since for pneumonia because I have been so immobile. I’ve been in bed since my tracheostomy because I need to get my chair fitted to handle the additional equipment.
Since my surgery, it has been really hard on me and my caregivers. The Ventilator I’m on sounds alarms, sometimes for no reason, so you can imagine how frustrating that is for my caregivers. I’ve been in respiratory distress several times, two of the times took me back to icu. Don’t get me wrong, I’m thankful for the ability to breathe but you have to give so much up, at least in my case. I can’t eat or drink because I have loss the ability to to control my tongue.
As for my care givers, my wife Julie and my daughter Abbie, since I have lost all muscle control, they have to do everything for me, respectively of course. Mouth suction, my secretions are out of control, deep trach suction, clean under my trach neck band, change my inner cannula, change my neck band, and all that comes with keeping me clean.