My daily schedule in the hospital was a bit like the movie "Groundhog Day". The same things, day in and day out. It was probably boring to others, but never to me. I dreaded each new day and I was working too hard and was too exhausted every night to be bored.
Every day would start around 5:30 with a much hated blood draw. I had to have one every morning so they could check how thin my blood was. On one occasion, it was so thin that I was not allowed out of bed because if I even got the slightest bump, I would start bleeding internally and it may have been daedly. Honestly, I was concerned but only too happy to have a whole day of peace. Usually my blood was okay and I was just asked to be careful in therapy. By the time the lab tech left, I was wide awake but I tried to get as much rest in as I could before the therapy began.
Around 7, I would get my therapy schedule and then I would get my HUGE list of meds (through my G Tube) and get my finger pricked to check my blood sugar levels. Not having the ability to swallow, I was fed a Nestle vanilla high caloric and high sugar mix through my G Tube. Not sure why it was flavored but to this day I hate the smell of vanilla.
At 8 my mom would arrive. My room faced the elevators and I would watch both them and the clock for her. She was my security blanket, my advocate, and just my mommy,
Around 7:40 I started therapy. I would do Physical, Occupational, Speech, and Recreation therapies all morning. Any breaks would be spent in the therapy gym on a bench, with my angel mom massaging my legs.
There was an hour break for lunch during which my mom ate and I rested up for the afternoon.
In the afternoon it was therapy, therapy, and more therapy. And for anyone who thinks therapy is nice and gentle, let me tell you, it's not! It was a full on workout both physically and emotionally.
By 4:30, I was done with therapy. My mom and I would go back to my room and she would read to me.
A little after 5, my mom would go back to her hotel (she moved in to the hospital guest house) and Robert would come. He and I would talk, take "walks" or he would play on his phone if I were too worn out to even do anything. We needed the closeness. I needed it. He would leave around 7 and then race home to tuck our boys in bed.
From 7-9, I watched Nick at Night. It was mind numbing but I was too tired to watch anything that required me to actually pay attention. At 9, I had my nightly meds, which took anywhere between 1/2 hour to 45 minutes, depending on the nurse. Some nights I would fall asleep with people still in my room and the T.V. on.
Usually around midnight I would have to go to the bathroom so I would have to ask for help. At first this meant I was catheterised, which involved lights and at least two people. When my bladder started working again I had two people to help get my trach tube, my feeding tube, and often my I.V. tube arranged or unhooked, then transfer me to the bedside commode and back again. Not a 1 or 2 minute job. Then, I would be fully awake and it usually took about an hour before I was back to sleep.
Wash, rinse, repeat.