I had been in the ICU over a month at this point….all my surgeries except one had been completed, at this point I could not walk on my own anymore, I had already undergone my trach surgery that I wasn’t aware of when it happened…just went to sleep how I thought was normal, and dad and Sean got the call in the middle of the night that unless they trached me I would not live through the night.
For the record my lungs are jerks!
So trach meant hooked up to a ventilator with large blue tubes strapped around the hole in my neck breathing for me. As an example it took approximately 45 minutes for me to use the restroom (#2 for those counting since I had a catheter). I would press my nurses button, they’d appear anywhere from 5-15 minutes later, it would take me 20 minutes to get unhooked enough to sit up, 2 nurses to help lift me up and onto the bedside toilet, then another 10 minutes after “going” for the nurses to lift me up, clean me up, then about 15 to get back into bed which was the worst part. In order to have me scooted up to where I was sitting up properly (because I couldn’t breathe even with the ventilator when I was laying down) the nurses would basically have me hold my breath while I was laying flat then they would scoot me with the sheets to the top of the bed, then slowly raise up the back of the bed.
FYI….the most terrifying 10 minutes ever not being able to breathe on your own.
And to make matters worse, my hands were shaking so badly from my body adjusting to my Prograf medicine and the only way I could communicate was by writing on a tablet, and hope someone understood it. One night in particular, I was getting very very discouraged by all of this. Every day things seemed to slow down even more and the thought of getting out of ICU kept feeling like it was slipping further and further away. It was this night I wrote to my nurse, “I don’t think I’m going to make it” on my tablet. The gravity of even reading it back after writing it down still hits me hard, because for the first time in my life I actually truly believed it. So one of the many reasons why I love the liver ICU nurses so much is because that nurse at 2 am called and woke up Sean and told him what I had written. 30 minutes later Sean burst through my door half determined half mad at me for attempting to give up.
He sat there and talked to me for a long time and gave me the best piece of advice I’ve ever gotten, and it’s so very simple. Just do one thing a day. Even if it is just PT coming around and standing you up from your bed. And for some reason that stuck in my head the rest of my stay in the hospital and I made it into sort of a game. My main doctor, Dr. Mobely even said looking back that “something changed for you that week and you’re improvement just shot straight up.” Granted some days my PT “one thing a day” was just walking 2 steps out of my door but then I worked up to 2 laps around the nurses station, and each day i achieved one new thing.