Early Morning Musings

It is strange to be the mother of a chronically ill young adult. There is no telling what a day might bring. Sometimes, you might have a small string of “normal” days and then be plunged back into the chaos known as cancer and epilepsy without warning. Ravi had several good days this week, despite being under sedation for both an MRI and a radiation simulation. Anesthesia tends to make him dopey for about 24 hours and he received anesthesia not once, but twice in the past week. Nonetheless, by Wednesday, he was chatty, communicative, and willing to eat anything that came within his grasp. It does not matter if the food is on his plate or mine, when he is hungry all food belongs to Ravi. At this point I don’t even fight him for it. I can always fix myself another plate and we are just happy when he eats. For the first time in his life, he is close to a proper weight for his size. He is still a long, thin fellow, but no longer looks like an escapee from a concentration camp. His hair has also grown back in, making him look less fragile.

Wednesday was as close to a normal day as possible. He was awake during daylight hours and asleep at night, which is not often the case. He got his meds on time. He was able to clearly let his father know that he wanted a freezie and a chicken quesadilla from Taco Bell and got both. Around 11pm he retired to his room to watch videos. A few minutes later he happily gave up the iPad and went to sleep. Thursday morning was dark and rainy. I heard him stirring around in his room. He grinned when he saw me. He had no inclination to get out of bed but was very happy to cuddle for a while. He drifted back to sleep, and I tiptoed out. A few hours later Robert and I were up puttering around and getting Ravi’s meds ready. The peace was split by the horrible groan that Ravi makes when he is going into a seizure. We raced into his room. Though the seizure lasted only a moment it was much more violent than the one he had on his birthday. He bit his tongue and blood was trickling from his mouth. He soiled himself. As the seizure subsided and I held him, he let out a long shuddering sigh. As I rearranged the covers on the bed, something that should not be there caught my eye. His G tube had fallen out. Perfect, this meant a run to the emergency department. For those who are not in the medical field, the first weeks in July are the best times to avoid the ED. New residents come on board the first week in July. A week before they were medical students. Now they are doctors and chaos reigns, even with the best of attendings. I was not looking forward to facing the ED on the 4th of July. I had the pediatric oncology fellow on call paged and waited for her to call me back. Fortunately, it was a doctor I knew, liked, and trusted. She called me back and said that, yes, a trip to the ED was necessary but things had changed. Ravi was now a 22-year-old and had to go to the adult ED. She had pleaded with pediatrics, but they gave her a hard no. He had to be seen by practitioners in the adult ward. We loaded a very dopey, post ictal Ravi in the car and set off for the hospital in a down pour.

Fairview Riverside is in a sketchy part of town. The first thing I noticed as we entered the ED was a large drop box for guns. A sign said that if one had a weapon, one must either return it to one’s car, or leave it in the box and not get it back. Armed guards stood on either side of the door, watching everyone who entered. It was a bit unnerving. Fortunately, once we got in, things were pleasant. Dr. G had called ahead, and a nurse was waiting for us. We were directed to a room and an older doctor popped in. He said that his son had had a G tube for 17 years and this should not be a problem at all. I think he spoke too soon. We were not certain how long the G tube had been out, and the stoma had started to heal. He could not fit the tube back in. He tried progressively smaller tubes until he found one that fit. This was not the exact kind of tube that Ravi needed, but it would work in a pinch to get his medicines in and would keep him from being admitted. Through all the fussing and prodding Ravi was a very good sport. He used Sam to chat with the nurse. He said it hurt and he wanted to go home. He even said please. My heart was breaking. Eventually, a tube was put in that would work for a day or so. The attending called Dr. G and asked if she could set something up with our team the following day for a more permanent solution. Since it was a holiday, the hospital only had a skeleton staff available. He taped the tube to Ravi’s abdomen and sent us on our way. It was not how we had planned on spending 4 hours, but such is life if you have a chronically ill kid. There are down times, lull times, and then times when an emergency pops up and your life and your schedule are no longer your own. The only thing to do is to put your child and your trust in the hands of the medical establishment and pray.

It is now 4am. I should be sleeping but I am writing because my muse has weird working hours. Ravi and Robert are asleep. The pets are asleep. The house is silent. I am not one to throw pity parties. Usually, when life throws me curve balls, I sent up a prayer to the universe and wade into the chaos. I don’t wonder why the chaos happened; I just deal with it. Last night was different. I lay in bed for hours wondering why life has to be so hard for Ravi. He is autistic and has epilepsy and cancer. It seems to be a bit much. Ravi loves life and is a creature of joy. He is happy with the simplest of things, laughing with a friend, going for walks, chatting with Sam, or going for rides in the car. He likes 80s music and Taylor Swift. He likes sunny days and pizza. Life has continued to throw him more and more curve balls since his diagnosis in December of 2022, and I have yet to hear him complain or repine. He still greets every day with a smile. He is happy to see me every morning. He never refuses to get out of the car when we make yet another trip to the hospital or clinic. His bravery in the face of adversity takes my breath away. Ravi clings fiercely to life and as long as he has this zest for life, I will continue to fight for him. I don’t know why his life has to be so hard. In any way that we can, we, his parents, try to lighten the load. But this is a road that Ravi has to walk. I am so grateful for the friends who continually check in and walk parts of the journey with us. You make this road bearable. When I update you next, I hope I have happier news. In August we will be going on Ravi’s make a wish trip. Before that, he has 5 days of radiation. Be good humans and we will be in touch. Peace.