(continued from "'The Trache' - a Typical Morning")
Just a few excerpts from my mother's journal entries regarding her and my father's sleeping arrangements:
The pediatric floor fills up so they move dad and me to room 614.
We have no room because the hospital is full. Dad and I sleep in the dialysis machine room.
We now have room 614 again until we have to leave.
Dad and I had to sleep in 298 today. They sure have to move us a lot. The hospital is so busy.
It's 6:45 the nurse comes and tells me they need the room we were sleeping in. I come to find you awake. Good morning pumpkin.
I wasn’t in the ICU long before I started hearing stories from the nurses about a little girl named Kristy. Kristy’s 13 month hospitalization made mine seem like a brief visit. Her situation was my introduction to the crazy bureaucracy that is the health insurance industry.
Kristy suffered from something called Central Sleep Apnea. There’s a part of your brain that tells you to continue breathing while you sleep, but Kristy’s fell asleep right along with her. During the day she was a healthy young girl with a trache; laughing, talking, running, and playing. But at night she required constant supervision. If she were to fall asleep without a machine to breathe for her, or if she were to pull off her breathing mask unconsciously in the middle of the night, the result could be fatal. Of course her parents had to work and take care of their other child during the day, so they could hardly sit at her bedside every night. Her insurance would pay for all-night nursing. Well, most of the time. I don’t know how many times this happened previously, but when she was around five years old her health insurance decided that they would no longer pay for all-night nursing. Instead, Kristy, who was otherwise healthy, had to be hospitalized. And while most children get to stay in the pediatric ward upstairs with windows and bright colors and toys, Kristy and I were forced to stay in the white-walled ICU. The ICU where over 90 percent of the other patients slept all day and night, attached to machines while recovering from surgeries, injuries or illnesses. But because we both had traches, she and I required a smaller staff-to-patient ratio than the pediatric ward could offer.
Although I was several years older than Kristy, the nurses couldn’t help but compare our situations. Like I said, not many children stayed in the ICU. And they certainly didn’t stay for as long as we did. Thirteen months - I can’t even imagine it. Kristy was in kindergarten at the time, and I was told that a bus would arrive at the hospital in the mornings to pick her up and take her to school. Then she’d return in the afternoon and stay the rest of the day and night. My parents stayed at the hospital during my entire stay, moving from room to room, but Kristy’s parents could not. They couldn’t even visit every day.
I’m not sure when, but one day I heard that the famous Kristy, once again having insurance troubles, was returning. I don’t remember if I looked forward to having another kid around; you’d think that I would. However, we were at least five years apart in age and what seemed like 20 years apart in maturity. Except for my physical therapy sessions, I was mostly confined to my bed or to a chair. I enjoyed talking to my nurses, but as an only child I knew how to entertain myself. I colored and watched movies for hours. Kristy was a typical, healthy seven year old girl. She ran around the ICU, nurses chasing her back into her tiny corner. They were never mean to her, they loved her, but she had energy! She wanted to play! A couple times we colored together and or watched a movie while she chatted my ears off. Although she sort of annoyed me, we had a common bond; we were stuck in there together. And honestly, I felt sorry for her. They seemed caring enough, especially her mom, but I couldn’t understand why her parents didn’t visit every day. My mom tried to explain it to me, but it just didn’t make sense. So at first I tolerated the only playmate the ICU had to offer. And by the time I left I had grown to love her, too.
Another child came into the ICU while Kristy and I were there. This was a two or three year old baby named Oscar, also with a trache. I was told that he came to the hospital from time to time with pneumonia or bronchitis. He remained in a cradle during his visit. I couldn’t see his or any other bed from my room. But when he first arrived I would often hear his breathing machine alarming. I have always been an empathetic person, and I was overcome by anxiety every time it went off. Finally, I asked my mother to please go and check on him. Apparently, Oscar was quite the sneaky baby. He would wait until no one was near him and then tug at the tubing that connected to his trache until it popped off. The alarm would sound and his nurse would come running. He/she would find him smiling, proud of his accomplishment. They would softly scold him and reattach the tubing, only to play the same game a few minutes later. My mom returned laughing, and assured me, “Don’t you worry about that baby”. During one of my physical therapy sessions I asked to walk over to his bed and couldn’t help but laugh myself when I found a baby that I could only describe as so ugly that he was adorable. Giant blond curls and big green, pointed eyes with what I guess were birthmarks on both sides. He gave me a big, beautiful smile.
It wasn’t long until he got healthy enough to go home, once again leaving Kristy and I as the children of the ICU.
(to be continued...)