I was moved out of the ICU after about 5 days. I made it to the step down unit. Because of all of the antibiotics and new medications I was on I suffered with severe nausea and vomiting for weeks. I couldn't keep anything down. Eventually they started TPN through my IV to give me some nutrition. This lasted a couple weeks until my liver and kidneys started going all out of whack and not working properly. Then they decided to try tube feeds. Just imagine that gross yellow tube hanging out of my nose. I was a piece of work! Tube feeds were okay for feeding me but I still had to try and eat to but that didn't work. Just more nausea and vomiting.
They were running out of ideas of how to control my nausea so one day a miracle happened....my doctor decided to take the tube out and see if it was irritating the back of my throat and that was why I couldn't eat. So we pulled it out and suddenly I wanted a basket of fries from downstairs. Mom went and got me some and I ate the whole basket!!! Its funny how one day I can't eat anything and the next I'm eating fries! The next day I even had Wendys!
The nausea was what was keeping me hospitalized (my lungs and physiotherapy was going great!). As soon as I had 4 good days of eating I was discharged. It had been 6 weeks in hospital.
I still had to continue going to the hospital daily for my physio, which consisted of strength exercises and occupational therapy. I also have to continue on one IV medication for a year so we had to go to the medical outpatients unit twice a day to get my infusion. Here is how our out of hospital schedule looked:
6:00am: Wake up
6:30am: Leave the house
7:00am: Be at medical outpatients to start the iv med
8:30am: transplant clinic (Tuesdays and Fridays)
physiotherapy (Monday - Friday) We went after clinic if it was a clinic day
10:30am: Occupational Therapy
11:00am: Head home for lunch. We then had the afternoon to ourselves to do what we wanted, but
most of the time I was too tired to do anything so we laid on the couch.
5:00pm: Make a quick supper and eat
6:30pm: Head back to the hospital
7:00pm: Be at medical outpatients to start the iv med
8:30pm: Head home and go to bed so we can be up bright and early for the next day.
All of this continued for 3 months total. We were discharged from the hospital and rehab program on April 2, 2015. It was nice to know I was going home!