Getting our groove on

Hello, from the infusion couch! Is this different than the infusion chair? Why, yes, it is! Ravi and I are hanging out in our living room as he gets his IV bolus of saline. As the liquid trickles in, he is becoming more and more animated. Occasionally, he gets up and does a lap or two around the room. I think he just likes seeing me chase him with the IV pole. The cat is horrified. The nurse came, accessed his port, gave him antibiotics, checked his wound (which is healing nicely) and hooked him up with fluids. She will be back in an hour do de access him. Though we have been pushing fluids into his mouth all day he has been super floppy. It is absolutely amazing what a bolus of fluids can do for his energy level and overall disposition.

So, what does one do for an hour when one is stuck on the couch with their favorite autistic friend? One can do lots of things, not including discussing upcoming birthdays, watching Word Girl, researching the next type of chemo Mr. Boo is going to try, setting up a date for a spine MRI, and asking my very patient editor about how to launch this blog into a book. I have been working with Abbey since last spring and she is an amazing editor. We have some finishing touches to add to things, and then we will start pitching our idea to agents. I realize that one can try to sell one’s book without an agent, but also realize that 95% of the time, the manuscript with just get tossed without a second glance. I want Ravi’s story to have a fighting chance.

The saline bag is about 3/4 empty. Ravi is in fine form. The cat is still horrified. Soon, the nurse will come back and de access the port and go on her merry way. Robert will come back from the pharmacy with another of Ravi’s many meds. I think he is up to 10 different medications at the point, given every 8 hours. Shout out to my awesome spouse for keeping the pill minder full and remembering which medication happens when. I handle all of Ravi’s scheduling and My Chart updates. I do a lot of reading and ask a lot of questions when we go to doctor visits. Robert keeps track of meds and does all the driving. Somehow or another, we make it work. This is not a job for a single parent! If you are a single parent and are reading this, you have my undying respect, and can I take you out for a cup of coffee? Robert has returned with food for Ravi from Wendy’s. Food and fluids are happily being consumed. Soon, he will have enough energy for a walk. It looks like a beautiful day outside, time for all of us to get some Vitamin D.

Thank you all for your feedback, your friendship, your prayers and good vibes. You are all excellent humans! We will be in touch. Peace, Harriet.