16 Days

Sixteen days , a little over two weeks. That is how long Ravi was in the hospital for chemo. We were supposed to be in and out in four or five days. The fates had other plans. Methotrexate is the chemo drug he was receiving this time. In the past, he has gotten severe mucositis from it. This means his mouth, lips, and throat were covered in sores. Imagine having a canker sore that went all the way from your lips to your stomach. It makes eating next to impossible. The only reason Ravi survived was because he was getting all nutrients and fluids through his g tube. Before the next round of methotrexate I began giving him glutamine. It worked. He sailed through that round of chemo with minimal discomfort and was able to take in food and fluids by mouth and by his gtube. The plan was to return the next week for another dose of methotrexate and the following week for a dose of cisplatain. Well, things did not go as planned.

We checked into the hospital on April 17. That evening he received his dose of methotrexate. In the middle of the night, I became aware of nurses in and out of the room, administering something else into his port. What I found out later was that his labs showed that his kidneys were in severe distress and they had given him a rescue med to counteract the chemo. Usually, leucovorin is given after chemo to stop damage to the kidneys. This time, it was not enough. This followed 16 harrowing days. To get rid of the toxins, the doctors were pumping him full of fluids, but his kidneys could not keep up with the burden of the extra fluid and quit working. In less than 48 hours he gained 30 pounds in water weight. He looked nothing like himself and was wildly uncomfortable. The doctors kept listening to his lungs to see if he was in distress or if the lungs were sounding crackly. So far, they were not, but he was clearly miserable. Somewhere in the middle of the night, around 2 am I went nose to nose and toe to toe with the resident on call. Ravi was in pain and laboring to breathe. He could only breathe sitting up, and that was hard. I called the resident and begged for Lasix to take off some of the excess fluid. She did not want to do it. I would not back down. Eventually, she called her supervisor who agreed to 20 mg of Lasix. I stayed by his side the entire night, watching him breathe, willing him to keep breathing. About 7am, Robert took over and I staggered home to feed the animals and grab a few hours of sleep.

The next few days were long and hard. The regular doctor prescribed Lasix and leucovorin on around the clock basis and slowly Ravi began to pee out the excess fluids. It took many days before I could even see his ankle bones again, or that his normally angular face had any definition at all. In the meantime, the methotrexate was taking its sweet time leaving the system. He could not leave the hospital until all of it was out of his system and his kidneys could work on their own without the Lasix.

Finally, on day 14, the methotrexate cleared his system. Now, he needed to be monitored to see if his kidneys could be weaned off the Lasix and still work on their own. He was producing huge amounts of urine and his water weight was coming down. He was beginning to look at bit more like his usual self. On day 15 he was given his last dose of Lasix. The kidneys continue to do their job and the creatinine level was coming down nicely.

On our 16th and final day at the hospital he was given a renal function test over the course of four hours. Fortunately, this was done in the hospital room and he slept through most of it. Blood was drawn from his port over 30 minutes over the course of 4 hours while the kidney function was measured. Finally, he was de accessed from his port and we were sent home. Originally, we were supposed to come back for his round of cisplatain on Monday, but I talked the team into giving him a well-deserved week off. I cannot describe how happy we were to bring him home.

Two days ago, I received the results of the kidney study. There was acute damage. His kidneys are only working at about 50 percent to 60 percent. Of course, this was just the information I got off MyChart, and no doctors note to go with it. I contacted our nurse coordinator and asked if this damage was permanent and what did this mean for going forward with the methotrexate. I received a note back from her saying that due to the severity of the kidney damage and the mucositis, the team as hesitant to use methotrexate in the future, but she would give me a call in this morning. His doctor had chemo plans she wished to discuss with me on Thursday when we check in for the next and last round of cisplatain.

I would not wish these last 16 days on anyone. I want to thank all my friends and family who helped out, reached out and made this journey possible. My sister-in-law Cindy, but her steadfast guidance and understanding. My sister Mags and my niece Aya for feeding and loving on my animals. My dear friend Alexandra who drove me to and from my half marathon, took pictures, and cheered me on. For the nurses who gave Ravi so much of their love, care, and attention. And to everyone else who wore yellow, sent messages, prayers, and love, thank you!

Ravi went to school yesterday for the first time since February. He was all smiles. I plan on sending him again today and for a few days next week before we readmit to the hospital. His graduation date is June 13, and God willing, he will walk with his class. Due to covid, he did not have a formal graduation ceremony, so this is a really big deal to us. I hope to hear from our nurse coordinator today and then I will apprise every one of his upcoming treatments. Go # TeamRavi!

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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