Last Tuesday was an amazing day. Boo woke up at 4:30 in the morning and told me he wanted to eat peanut butter and go to school. I could help with the peanut butter immediately, but school had to wait a few hours. I was ecstatic that he had enough energy to want to go. At 10 am sharp we pulled up in front of Focus Beyond and he got a hero’s welcome. He had the best day! Teachers and aids told me they had never seen him smile so much, and he is a pretty smiley kind of guy. That evening, I went out for a run with by run club. It was the first normal feeling day our family had had in over a month. It was glorious!

This got me feeling a bit hopeful. I had deleted everything except Ravi’s medical appointments out of my phone. Just to make the calendar look happier, I added school to the next few days. Bad idea! Fate came flying back at me like a boomerang and upset all my happy little plans.

Wednesday started out icy. Schools were delayed and Ravi was sleepy. I decided to let him sleep and see if the roads cleared up. Midday he woke up but was low energy. I texted his teacher to let him know he would not be coming in. He just seemed off. At 2pm he had his first seizure of the day. This was his first one in over a month. It lasted a couple of minutes and then he slept deeply. I called the doctor on call and he said just to wait and see what happened. He did not think the seizure was caused by any of the cancer drugs. I also called the neurologist on call at Gillette. He told me to wait and see. Ravi dozed most of the afternoon and refused all food and water. Our worry deepened. At 7pm he had another seizure. I called the hospital. We discussed the lack of eating and drinking and the most recent seizure. Neither of us wanted to bring him into a germy ER full of sick kids, but we decided that our threshold for bringing him in would be one more seizure. At 10pm he seized again and I had to apply rescue medications. I called the intern on call and said we were coming into the ER.

The ER was amazingly empty and we got seen immediately. His vital signs were taken, blood was taken for cultures and he was hooked up to an IV. He was very tired, ataxic and out of it. Eventually, we were given a room on floor 5, oncology, and sent upstairs. We got settled into bed around 2am. He fell deeply asleep. I did not sleep at all.

The next morning, we met with his team. It was decided that stress had caused the seizures and the chemo was causing his body considerable stress, and he was still unable to eat or drink. The plan was to keep him in the hospital, get him stable and run TPN through his port for instant nutrition. The day past rather peacefully. That evening was a different story. Ravi usually gets his evening meds around 9pm and goes to bed by 10 pm. If he misses this crucial window of time, he gets a second wind and is up at night. Pharmacy was late, very late in sending up his meds. They slowly trickled upstairs. By midnight he still had not received his anti-seizure med. I politely but firmly told the nurse that this was not okay. He had already had 3 seizures the night before, and lack of sleep causes seizures. She went to light a fire under pharmacy. Eventually, the Fycompa appeared, and we gave it to Ravi. Too late, we had missed the crucial window of time and he stayed up until about 4 am. I did not sleep at all. Nurse and aids were in and out of the room all night long and rounds started early that morning.

When the doctors came to round Ravi was still sound asleep. They decided he was stable enough to go home that afternoon. He would be on a higher dose of Fycompa, and they would gradually reduce his TPN flowing into the port. Ravi continued to snooze. We were dismissed around 3pm, went home and spent a lovely evening with Mags and Aya. Bedtime came and we realized that we did not have Ravi’s meds that I had taken to the hospital with us. Oh no! This is when I learned a valuable lesson. Never take personal meds to the hospital because nurses will take them and lose them. Robert called the charge nurse who went looking for the meds but never called back. Ravi was wide awake and stayed that way for another 12 hours.

Morning came and we were all fried. Ravi looked horrible and Robert and I did not feel much better. I called the pharmacy and was able to get an emergency 3 day supply of his clonidine, which he needs to sleep. I called the doctor on call who assured me that it was the lack of clonidine that had caused the insomnia. Robert went to the pharmacy to pick up the clonidine. Ravi continued to pace, flap, and hoot. It was like he could not get comfortable in his own skin. I felt so sorry for him. Robert returned with the clonidine and set off for Fairview to try and track down the missing Fycompa. I gave Ravi 2 clonidine and an Ativan for good measure. Mercifully, in 20 minutes he fell into a deep sleep. I spent the next hour calling different providers to try and get emergency med refills. This was not easy to do on a holiday weekend. Robert came back in from the hospital. He had not had any luck getting the nurse to find the meds. Just as we were about to give up hope, the nurse called back. She had found the Fycompa. It was not the right amount, as we needed a prior authorization to go up 2 milligrams, but it would be enough. Robert turned around and set off for the hospital once again.

In short, it was a very long 72 hours in which I did not sleep at all. We learned to never take our own meds to the hospital. I learned to use my voice to get nurses to give my child his meds in a timely manner. Robert gets high marks for simply hanging out at the hospital and not giving up until meds were found. I learned not to put anything new or hopeful down in my calendar that looks like a normal activity. Yesterday was a blissfully peaceful day. Ravi got all his medications on time, did not have a seizure and was able to eat some on his own. Today we return to the hospital for a day or two while he receives his next infusion. I hope that his hospital stay is less traumatic. We are taking all your thoughts, prayers, and good intentions with us. We are leaving medications at home. The hospital pharmacy can provide all the medications. Through this all, Ravi has been a trooper. He has lost his hair, had 3 seizures, been unable to sleep, and yet is still smiling. The kid amazes me. I am proud to be his mom. Be a good human and we will be in touch.

Author: snort262

I am a wife, mom, long distance runner and fierce autism advocate. My background is in education. Currently, I am a nanny, a tutor, and an autism consultant.

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