Life has been rough for Ravi the last week. We checked into the hospital early Tuesday morning. It became rapidly apparent that he was in no shape to receive chemo. Despite begin fed and hydrated through his g tube, he had lost 5 pounds in 3 days. His mucositis was out of control and he was in extreme pain. In the clinic he was given a bolus of fluid and a shot of morphine. When he was stable, we moved into a room on the fifth floor, oncology. Thus began a few days of fever, pain, and the extreme inability to eat or drink by mouth. Cultures were drawn and sent to the lab, but no one could explain the 103 F fevers. No one could explain the seizure like movements in his face and eyes. He was put on fluids, feeds every 4 hours around the clock, a morphine drip, Ativan, and Tylenol for breakthrough pain. Most of yesterday he slept deeply, wrapped in blankets like a giant butterfly in a cocoon. When he is asleep his resting heart rate is around 50 beats per minute. Yesterday, it hovered around 100. His temperature fluttered between 99.5 and 102.5. He moaned a lot in his sleep. I felt absolutely powerless. The doctors assured me that they were not going to give him chemo during this admission. He was here to heal from the raging mucositis and gain weight. The hours dragged by. The only relief I had was practicing Bach on the electric piano in our room and getting on the treadmill once a day for a run. The rest of the time, my focus was solely on Ravi.
I went to bed around 11pm last night. Suddenly, at midnight, Ravi sat bolt upright, bright eyed, and started looking around. I handed him his beloved Sam and he chattered happily. He requested a trip to the bathroom and had a few sips of Gatorade by mouth. I did not sleep last night, and I am happy. He was up all night, happily chatting with Sam or watching videos on the iPad. His fever and pulse were down. His eyes were clear and bright. His lips were looking a bit less painful. He has gained back a tiny bit of weight. He is still very shaky on his feet and a walk across the room tires him out.
Currently, it is 6:30 am. Sun is not up yet, but Ravi is! Mercury got home from OSU last night and we will see her today. The pets are rejoicing, except perhaps for the hedgehogs, who are really in it for the bugs. I don’t know when we will be discharged. I don’t know when Ravi will receive his next dose of chemo. He has a lot of ground to make up. But he is happy and smiling, and that is enough for me. Thank you all for your texts, your emails, your prayers and Healing Touch from afar. Ravi has felt your love and is responding.
Harriet's Hedgehogs and Autism Advocacy 