Today, Rafi was in much better spirits and was much more animated than in the past couple of days. I am guessing that it was probably due to the fact that we didn’t do a bath and bandage change. For now we are going to avoid the ativan and oxycodone combination and try a different cocktail. We think the ativan just doesn’t work very well and it makes her a little sick to her stomach. We’ve given it to her on 4 occasions and she’s vomited twice. I think it is safe to assume it doesn’t agree with her. In addition to that, after two years of oxycodone it’s possible that she’s built up a resistance to it. We hope that the new mixture (which I will go into more detail tomorrow) will make her more tired and might let her actually sleep during the whole thing. I am hopeful this works but not unrealistic.
Rafi has decided to call her tubes a leash at this point. I find it hilarious. It’s my fault she is saying it, because I jokingly referred to all her tubes as one. Once, I said it once in passing. “Daddy what you doing with my leash?” It cracks me up.
On the topic of side effects from the chemotherapy drug, she is having some cramping. She complained this morning that her stomach hurt, then it would go away. Ten minutes later she would complain again. During rounds Dr. Tolar told Jackie that it was the busulfan. So while Jackie and I felt bad for her, we knew this was something she could handle easily. She’s so damn tough.
We have a pretty big room as far as hospital rooms go. For those that live in NYC, it’s about the size of a small studio apartment. We have a queen sized aerobed in here (which we deflate during the day) and there is room for a small round table, the hospital crib, our football goalpost (where all Rafis’ pumps are screwed onto) and of course our shelving full of bandages. They really stocked us up on all the supplies we could want, or need or ask for, for that matter. It’s great on that front. I was expecting a shortage of bandages and adhesive remover spray, etc. Nope. We have a cornucopia of products.
Not much more to report this evening. Our nurse for the evening just walked in to hook Rafi up to yet another dose of busulfan. With that, I bid you goodnight.