Monday, July 4, 2011
Today we planned on a parade. Our neighborhood has a 4th of July parade every year. There are streamers on bikes, wagons, and strollers. We wanted to take James. We talked about it last year while Kara was pregnant and counting down the days of summer. This year, we thought it might provide one more thing to do with James. Outfits were matched. I wore a blue polo with red white and blue plaid shirts, Kara wore a red white and blue shirt. James had an outfit that matched my shorts. We drove through the parade on our way to ER today. We never even got to streamers on the stroller. Needless to say, that was not the plan. Nevertheless, as you can see from our outfits, the festive spirit was certainly there. We're still hoping we can see some fireworks from the room later. I'd also like a "U-S-A" chant from the nurses just because I think it would be amusing but I'll settle for fireworks.
James woke up throwing up. We gave him zofran, his anti-nausea medication. He threw it up. We thought that part of the problem was how angry he's becoming whenever a syringe of any kind comes near him. We mixed it in a pacifier. He threw it up. We gave him zofran orally, a tablet that dissolves in his mouth. We had some left over from our first visit to the ER, before he was diagnoses. He still threw up, even without eating anymore. We started two loads of laundry before we left home and did another once we got back to the floor.
We gave in and called the neurosurgery clinic, where we eventually connected with the attending neurologist on her cell phone. She told us to come in. We'd barely unpacked, and by 9:45 we were signing consent forms in the ER again. Like last time, we found ourselves whisked back to the ER with no wait. A different room. The nurses recognized us. Even the front desk greeters are beginning to get familiar with us. We're past the formalities of "How can I help you?" we skip straight to getting our badge.
The most distressing part of the day was that no one really knows what is wrong with James. his CT scan is clear, but he's throwing up on zofran. In addition, his eyes have acquired an upward gaze that they really shouldn't have. We're worried about seizures. Still, all the tests are clear so far- and because it's a holiday weekend, we're on hold until we can get more tests performed tomorrow. We're very frustrated because James appears to be getting worse, not better and no one knows why. He'll have a lumbar puncture for sure, and other tests will follow. As the over-extended (and only Dr. around today) resident said we're "running the traps" a phrase which took me back to Con Law in the worst way possible. Our biggest fear now is that whatever is going on with James will delay beginning chemo, which we can't do. James needs to start fighting sooner rather than later.
The culmination of this frustration meant a rather contentious exchange with the nurse- Kara and I demanded that someone, anyone, tell us what the hell was going on. Kara went a little Mama Bear on them, which meant we got to play a little good cop bad cop. You know you're the good cop when they try to talk to you first. The staff here has been great, and it's not their fault it's a holiday, but babies get sick on holidays. The best we got was a call from the neuro resident (who was dealing with a trauma in the ICU) to run through all the options we didn't have and to let us know tomorrow was on its way. This didn't really satisfy us, but our options are somewhat limited, and thankfully James remains stable. We count the small blessings. So we'll start up again tomorrow.
Here is little Jamesie after the one feeding which he did not vomit today (so far). He's tired, but as always, nothing puts the boy at complete peace like the boobie. It is his all-purpose healing balm.
Whatever is causing James' sickness, we want it cleared up so that he can get on to the important business of attacking and destroying the tumor. James Camden Sikes dislikes this inconvenience, but would like the tumor to know that no amount of delay will get in his way.
I hope everyone is having a great Fourth of July! Light some bottle rockets for us. I'd give James some poppers but I fear the consequences. Thank all of you for your thoughts and prayers, they are a constant source of comfort.