Friday, July 1, 2011
In this picture, James is exploring the finer points of baby piano on his iPad. Yes, my son has an iPad. Don't judge me. James discovered that if you hold down the piano key on baby piano it goes CRAZY. In what I would describe as a really obnoxious repetitive tone, but which he seems to quite enjoy. As you can also see from this picture, today also got derailed. James, Kara and I are back in the hospital. This picture was taken in the ER and we're now back on the floor.
When we left the hospital, James received several prescriptions. One, a steroid, makes him sick everytime he gets it. In the hospital before we left he threw up several times, we were hoping this was a response to the steroids. A complication of the major surgery he had on Monday is swelling of fluid in the brain- different from the hydrocephalus he suffered from before, as the fluid build up takes place elsewhere. My crash course in neuroscience continues. Like the hydrocephalus, which is now treated, this makes him throw up and could become more serious.
When he threw up once we wrote it off to a reaction to the steroids. We did the same thing the second time. by the seventh, we'd called the neurosurgery clinic three times and James was also running a fever. After attempting to bargain out an alternative with them, we received instructions to make our way back to the hospital and get to the ER.
Because our live is incomplete without further complication, Kara's car wouldn't start this morning. I jumped it and hoped that the battery just ran down during the week it spent parked in the hospital parking garage. We took it to an appointment and I followed in my car to make sure we did not become stranded. Kara's car didn't start afterwards. We switched cars. Naturally, this coincided with the time when we got our orders to make it to the ER. I went to three different stores on the way home to find one which carried and installed the battery for the car, yelling at the service people in the bays because I didn't want to waste time and get out of the car. Finally I found one who would do it, a little before Kara left with James for the ER. The salesman seemed taken aback when I expressed complete disinterest in the price and informed him I needed it ASAP as my wife was taking my son with a brain tumor to the hospital. To be fair to Firestone Tire and Battery, I've never seen mechanics move so fast.
By the time I arrived at the ER James had already received a CT scan. I walked into a battle between the ER nurses and Kara over whether or not to give James an IV or just give him fluids and meds through his port. After a little skirmish, the port prevailed- Kara and I simply felt that because James had surgery to provide an access point, we didn't need to add anymore and stick our boy yet again. At this point he's had lines in every extremity.
The ER experience was perfectly surreal. I associate ERs strongly with waiting, the last refuge when you're simply so sick you have no choice but to deal with actually going to the hospital. Kara told me that as soon as James arrived and she spoke the words "brain tumor," "craniotomy," and "vomiting" the staff whisked them away with no wait, no forms, no anything into a room. In the examining rooms we were surrounded by families with children suffering from severe colds, stomache bugs, broken legs, all the normal ailments of childhood. Despite myself, I felt jealous. Jealous of their time in the waiting room, the time their kids spent playing with the toys. Jealous of the fact that in a few hours, they would go home, not to return for a year or two. Jealous of their viruses. I know that James will never experience any of that, even after this. He will always be "special" medically. Special care. Special attention. A priority for all the wrong reasons.
Cancer eyes everywhere. The doctors. The staff. The nurse with a son named James too. All of them biding time until we made our inevitable ascent back to the floor. Neuro wanted to watch James to make sure he could keep down food in order to make sure the swelling subsided. The CT revealed nothing new fortunately. We returned to the floor and a new room, just like the old room. I felt defeated, even though I knew we'd be back in the hospital soon. I just wanted a week with family.
In many ways, the all-consuming terror of the first days few days has abated. What remains is a steady background of fear-the specifics are less terrifying, the possible swelling, complications. What remains terrifying is the knowledge that the experience itself will not be predictable, and is uncertain in and of itself. I am sure we will endure countless more unscheduled trips to the hospital, and provide more of the ER staff with the condensed version of James' history than we can imagine. Kara and I put together a "hospital bag" so we'll always have something to bring with us to the hospital on the spur of the moment. It reminds me of the bags we packed for Kara's labor, except we've replaced excitement and hope with fear and dread.
Tonight we're settling into our "hospital" routine. A nurse comes to check James' vitals. We barter for less vital checks if we can, confirm medications. Kara feeds James. We set up his portable DVD player (yes, he has a portable DVD player AND an iPad) on the dining tray and start a movie. We hope he sleeps, pull out the couch/bed and cram ourselves on it.
We are hoping to go home tomorrow- naturally, now that we're here James appears to be doing much better. He's more alert, less fussy, and so far has not thrown up again. We're optimistic this trend will continue and we'll get home tomorrow in time to start our week out right.
Thank you to everyone who helped us out today- as our plans changed, so did our needs and several of you were kind enough to accommodate us. Without the network of support that you all provide, this experience would be much more difficult. We are in your debt for all of your thoughts, actions, and prayers.
I'll close with a picture of Kara and James from a few weeks ago, enjoying dinner at Twisted Root (which sounds delicious right now). By close I mean open. Does one of you know how to position pictures on this thing? Because if one of you is blog savvy, I'd appreciate the help. I disengaged with technology sometime around 2007. I blame law school.