My Medical Journey: Part Three: How I Almost Died, Sort Of
At about 3:00 a.m., April, 2011 (the day after we got home, though I’m not sure which), I woke up again with terrible pain. I went to the family room, where I almost fell onto the couch. I finally fell asleep.
When I woke up, I had probably some of the worst pain of my life. I felt so horrible, and so weak, that I had to lie down on the bathroom floor on my way to and from going to the bathroom.
I was scared, very scared, and I wondered for a moment if I was going to die.
After a little while, my mother called the hospital again, because I obviously wasn’t ready to leave it. I was assured that I was going back to the hospital soon, and I finally fell asleep on the couch again.
After my nap, I felt a little better, and Daddy was ready to take me to the hospital. I got comfortable in his truck, and fell asleep again.
I was only slightly embarrassed to be in public in my pajamas and unbrushed hair.
When the nurse was ready for me, I had my blood pressure taken. That was when I thought I would faint. I got dizzy, and my sight was blurred. I began to breathe rapidly, and finally, I was taken into a room where I could lie down.
Then I had yet another IV needle stuck in my hand, and I put on yet another hospital gown.
Strangely enough, when I was brought to my hospital room, it was the same room I had been in before.
I was put on a completely liquid diet. Every meal they brought me consisted of MSG-laden broth, jello, a popsicle, which was basically frozen corn syrup, and some juice. Every day, I drank my juice, and ate a little bit of the jello and popsicle, but it was mostly disgusting to me. I couldn’t stand the broth, the popsicles, or, for the most part, the jello.
(I had water, too, of course. Some of that awesome hospital water. The hospital uses ice that keeps the water cold almost all day, and it makes the water delightful.)
Living on almost nothing, my stomach was almost always growling. Those first few days, a lot of my time was spent thinking about real food. Much of my other time was either spent reading, sleeping, and watching Harry Potter.
Daddy stayed with me those first few days, with my family coming to visit.
During one of those visits, Daddy brought me some Italian ice cups that I was allowed to eat. I liked them, and actually ate them. My parents got excited if I ate half of one.
During another visit, my mother brought me Ole’ Red, the laptop, and I spent a lot of time emailing relatives and nice people, mostly strangers, who had shown concern over my illness, and a lot more time playing online games.
(Through the emailing, I met a new friend named Sarah, who suffers from Celiac disease. It was nice to talk to someone who understood the pain I was going through.)
Then, on Wednesday, May 4th, my mother came to stay with me. During her stay, she decorated my room with horse posters, and organized my gifts and cards on the shelf. It made my room much homier.
That same Wednesday, they did another colonoscopy on me, and an endoscopy.
I was wheeled into a room, my jewelry was removed, and another oxygen mask was placed over my mouth. The doctors began to pump medicine into my IV, which was falling out of my hand. I had the feeling that the doctors felt they didn’t need to explain what they were doing, because I had been through this once before. It wasn’t at all pleasant.
The the sleeping medicine was pumped into my hand, I felt a great wave of pain in my hand. I also thought I saw a sudden flow of something white spray out of my IV. That was my imagination, I think.
When I woke up, my throat was sore, because of the endoscopy, and my legs were numb. I was tired and in pain, and I couldn’t open my eyes. I was scared again.
As a result, I began to groan.
Unfortunately, the nurse who was nearby after my colonoscopy and endoscopy was one of those nurses. She looked at me and said, in a tone that I would not call friendly, “Why are you groaning?”
I held no fond feelings for her afterwords. My thought, when I could comprehend enough to think, was, and no disrespect intended, “I am a child, I’m in pain, I can’t feel my legs. My throat is sore, I have to go to the bathroom, and I don’t know where my mother is. Why do you think I’m groaning?”
That very day, Wednesday, May 4th, 2o11, I was diagnosed with Crohn’s disease. I thought nothing of it at the moment.
Wednesday night, in my hospital room, I was given some real, solid food. I was feeling sick, and the food was not very good, so I pretty much just picked at it.
The hospital served me solid food for the rest of my stay there. Thursday (May 5th), the food still wasn’t very good, but on Friday, May 6th, it began to improve, and so did my appetite.
That Friday, my IV needle was taken out for a little while, and I was able to take a shower. I felt wonderful to be free from my IV. The shower wore me out, but it felt good to be clean.
The weekend was easier than the rest of my hospital time. I had many different nurses, most of them nice, one or two of them grumpy. One nurse constantly marveled over my long hair.
Much of my time was spent sleeping, other time spent on the computer, reading, and chatting with my mother. When I wasn’t in pain, I enjoyed it.
My mother still stayed with me overnight, and most of the day. She would usually leave to eat dinner at the nearby Ronald McDonald House, which was where my family was boarding. The others didn’t come to visit me as often, because Daddy didn’t want the children of the family to get sick.
There were a few annoying sides to my hospital stay. I was constantly woken up at, say, 3:00 a.m. for blood tests. (I had so many needles poked into my hand during that time that I began to think nothing of it.)
My IV, which my mother and I named PIB (Pain In the Butt) often began to beep, sometimes at night, sometimes in the day, and it seemed like the nurses took forever to come and fix it. It was also quite a pain to get it into the bathroom; Mommy had to help me. Another machine, called ALF (Annoying Little Friend) would beep a lot, too.
Doctors came to see me almost every day, and I started getting used to them pressing on my stomach.
Once, Mommy and I were awaiting a long expected visit from a doctor. My mother got up to go to the bathroom, which would take less than five minutes.
And then the doctor came in. While she was gone.
Since Mommy would be needed during the doctor’s visit, so that she could discuss medicine and stuff with him, the doctor left again, despite my mentions that Mommy would be back very soon.
Mommy found it rather annoying.
I found it rather funny.
Saturday, May 7th, 2011, Mommy and I watched the Kentucky Derby on the little TV in my room. Since we were so often visited by nurses, my mother wrote a note to anyone who might come in and interrupt.
The note goes as follows:
Horse lover inside. Come back after the Kentucky Derby, unless you are a doctor or have food.
The Kentucky Derby, which lasted about five minutes and did not quite exceed my expectations, went on undisturbed.
On Sunday, May 8th, 2011 (Mother’s Day), the doctors said I might be able to go home. And that evening, I was allowed to leave.
I was a little nervous. I had been in the hospital for about a week, and I wasn’t sure how I would take to life at home. Lack of food and exercise caused me to lose weight, and I was rather skinny. I left the hospital in my younger sister’s jeans.
Instead of going straight home, Mommy and I went to the Ronald McDonald house. The Ronald McDonald house allowed families to stay in their rooms while they had family members in the hospital. Paying to stay was highly appreciated, but not recommended. Inside, it was like a big home. There was a kitchen, a dining room, family rooms, and bedrooms. There were movies and toys to amuse children who were staying, and there was a backyard with a play-place, rather like you’d see in a McDonald’s restaurant. The manager was a sweet old lady, who was very friendly and very nice.
After picking up our family (Rebecca, my shadow, aged two at the time, rejoiced to see me), we started home, where our dog, Jedi, also rejoiced.
By the time we got there, it was dark. I was feeling mostly fine, but I didn’t have any muscle, which made it hard to climb my bunk bed.
I slept on the couch.