Jonathan

I don't think I ever really blogged about him. Maybe I should read back through my old blogs to find out for sure, but I find them so boring (I already know the ends of all the stories) that I can't bear to.

Anyway, Jonathan was a kid who was admitted on about October 13 for a big bunch of enlarged lymph nodes. He was treated with antibiotics, but in the first few days in the hospital, began a neurologic deterioration that we couldn't explain. It wasn't sudden, but a relentless slide with weakness, loss of speech, then loss of movement and unconsciousness. We had no test that could shed any light on the situation. We tried a lot of medicines, but we were just shooting in the dark. I expected him to die at any moment. In fact, I was once summoned to the ward for a child who had a cardiac arrest, and when I got to the ward I was heading straight to Jonathan's bed when I realized that it wasn't him.

After several days of deep coma, he started to slowly improve; first opening eyes, then a bit of movement, finally a weak word once in a while. When we moved into the new hospital, he was one of the critically ill kids that I moved personally. He was just getting off oxygen, and was able to make the 10-minute trip without supplemental oxygen.

One of the hardest things was getting nutrition into him. We did tube feedings for a while, but he hated the tube, and promised to eat if I took it out. He tried, but didn't do too well in the eating department. His clinic book shows a weight of 36 kg (about 80 lb.) a few weeks before his admission. His lowest weight in the hospital was 20 kg (45 lb.)!

We did various bed exercises to keep his limbs limber, and eventually to try to strengthen them. Finally, we started trying to get him to sit up, and then to stand. It was a slow process, but it was progress. His speech was slurred, but he eventually talked enough to start bargaining with me, or making demands ("a toy car and a toy gun!"--I gave him 2 toy cars). By mid-December I began saying that I wanted to get him home for Christmas. As the day approached I began to fear that it was an unrealistic goal, and even announced that it was no longer the goal. I was afraid that I was pushing him out before he was ready. However, by Christmas eve he was trying hard to eat, was walking without support, and really wanted to go. I figured he'd do better at home.

Today, I was working in the orthopedics room. At one point I looked up, and there was a little kid standing at the foot of the table watching me. I almost didn't recognize him, but it was Jonathan, looking much healthier than when he left the hospital! He still walks with a bit of a limp, and his speech is still a little slurred, but he's much better than he was. Really fun to see him!