Day Sixteen

James is perfecting his crawfish in this photo. He's dressed for the first and last time of the day and watching the Very Hungry Catepillar on his DVD player. We're hoping to upgrade to a home theater system in the hospital soon, but until then James will have to make do with just his potable DVD player and his iPad. It's a hard life.

As I write that, I'm struck by the fact that no matter what I buy James, he'll be using it in the hospital. No matter how much money I spend- nothing will change. James will remain sick. He will not improve as a function of the money I spend, and I couldn't come close to even paying his bills without insurance even if I wanted to. I'm pretty sure we burned through my annual salary in the first week here. This just highlights the how powerless I often feel here. James, Kara and I are all too often acted on, we exist in a constant state of passive voice. It's not that we don't advocate for James- we do- but so many of the big things, his tumor, his complications, his health, are fundamentally beyond our control. We can respond to them, but we cannot control them. On some days, like today, we barely even manage to contain them.

James did not have a good day. He's clutching his head- clearly in pain even if he can't express it. He's vomitting still. His spinal flow study didn't go as quick as planned, so we have to wait a full 24 hours until tomorrow morning to check it. Please pray that the study was a success and the medicine traveled well through James' fluid. The alternative would require us figuring out why it didn't, and undoubtedly further delaying his treatment. We do not want to delay his treatment any further.

Even radiology this morning started out on a rough note. I spent the night at home, and arrivedf at the hospital after James was taken down for his study. I went to the radiology front desk as instructed. The receptionist confused James name, confused the year I gave her for his birth date, and paused two times to take phone calls while talking to me. Not how you want to start your day. For the final nail in the coffin, she had no idea what James' study was and equated nuclear medicine with X-Rays. We're way past X-Rays. The radiology staff was very nice, even if James did have to go under anesthesia yet again. The doctor who performed the procedure was the mother of two six month old twin boys. She loved James' hair. Sometimes, I wish people wouldn't- it just reminds me he's losing it soon.

The study meant James, Kara and I had to go back and forth to radiology several times today for pictures to see how the fluid was progressing. This meant just as James became comfortable, we were headed back up with transport. James' mood worsened through the day. He's coming off steroids, which put him in a bad mood, in pain, and moving all the time. Not a great recipe. In addition, because we thought we might go home today if the study went well, James' meds were all switched to oral. James hates oral meds. He will literally do hold them in his mouth and spit them back at you for minutes on end. This is fine for most of them, but when he spits out the zofran, we have a problem. Because then he throws up. And that begins the cycle. The cycle began around 4 today, right after we received the deflating news that we would be here another night. James was a little overdue for zofran, and he threw up. We waited and tried again later. He threw up again. If not actively medicated, he throws up. No one seems to know why. Theories are floated. Kara and I are proponents of the subdural edema theory- the fluid build up around his incision site for his big surgery. The problem is, there's no shortage of potential causes. There are lots of things doctors think could cause James' nausea right now. There is nothing they think is causing James' nausea right now. We're trying to manage his pain better now. We hope it helps. So far it mostly just seems to be speculation on everyone's part. James can't say anything, so we don't know what he thinks. The situation is frustrating, and it's difficult to see James suffer, especially when we don't know why. Pain for chemo or treatment is one thing- it has a purpose. This is harder. It doesn't have a purpose and we don't know what it is. He's back on IV zofran and fluids now, and his weight is below what it was when we first admitted back on June 22 after he'd spent eight days vomiting. The doctors are trying, and all of the oncology doctors hear us out, we just can't seem to get to resolution.

We're hoping the following things happen tomorrow. 1) James' spinal flow study is a success. 2) We figure out and treat his nausea so that he can be strong to start chemo. 2 is definitely our number 1 priority- we'll figure out 1 if we have to get there. We just feel like we had a week- 1 week- to spend at home before everything, and now we've spent that week in the hospital. And no one can explain the problem that brought us back in the first place.

That's not to say random, unexpected things don't still happen that make us laugh. One side effect of your child vomiting every hour or two is that you go through weeks worth of clothes in hours. This translates into laundry. There is a laundry machine on the floor that we've monopolized all day. But it's not without its hazards, as Kara discovered today when we washed a load including a pillow. When we returned, the laundry machine had moved from the wall to the middle of the room, the machine walked forward by the unbalanced load. Kara was so proud.

That's a thumb up of approval. The laundry machine survived. In a weird way, it was one of the best things that happened all day. There are so many times in any given day when we feel like we're hitting a wall that these things are always funny.

Let's hope for a better day tomorrow. As always, thank you for your prayers.