Saturday, July 2, 2011

Day Ten

While previous posts might indicate that James prefers Apple products, as you can see he's equally content to munch on Android/Samsung phones. Here he's taking a bite out of his mother's phone because he can't imagine any better use for it. As usual, he's right. The highest purpose of any phone is chew toy.

Of all our days in the hospital so far, today felt the most uneventful. In many ways, this also made it the most frustrating. It is one thing to accept that you are in the hospital in advance of or recovering from some major procedure, like brain surgery. It's another to play a waiting game because no one really knows why you're there except that your son is very sick, and there are so many possible causes of his current symptoms that you need constant supervision.

James had a relatively uneventful night. Kara and I returned to the couch/bed and found that it was actually worse than we remembered it. At one point I remember waking up and thinking to myself that my entire right side was asleep. I wondered why, and then realized that it was just a byproduct of sleeping on that bed. It was that hard. A night away meant a better night's sleep, and less exhaustion meant worse sleep on the couch/bed. After we arrived yesterday and James received his anti-nausea medicine, he didn't throw up.

We were optimistic that whatever was causing his symptoms had passed- in fact, after getting some fluids and eating a bit James appeared to be in a much better mood. We hoped that whatever made him sick before had passed. At 7:30, he threw up again. We got more medicine and the Doctor on call (our neurosurgeon and many others are taking advantage of the holiday weekend) told us that they wanted James to go 24 hours without throwing up without medicine. Our countdown began at 8:30.

The day went as well as it could. We took James for a walk in his stroller around the hospital. We stopped to look at the trains (Children's has what is easily the most impressive model train set I've ever seen) which James pretty much ignored. We went outside and walked around the garden a little bit. It felt nice to get James out in the fresh air. I remember wondering when the last time he'd actually been outside had been, and wondering when the next time would be. Once chemo starts, he'll be limited to indoors and at home. The summer sun felt nice, the hospital temperature never feels right no matter how much you tinker with the thermostat, and you forget the season when you never go out.

We had several visitors, including Kara's new set of personal shoppers. One of our goals for this week is to take a set of family portraits before James becomes too ill and loses his hair. Some of Kara's friends were kind enough to go and purchase clothes for the event. I think we're going to look quite stylish. Given that earlier that day Kara asked me to change my T-shirt because it had "10 years of stuff on it" and I responded by spilling soy sauce onto my shorts, at least one of us can use the help.

James felt better today. We were particularly encouraged that during the walk he did very well holding his head up and sitting up on his own again. While he'd mastered that skill months ago, along with crawling and other milestones, he's regressed since his surgery. We were pleased that he seems to be regaining some of his strength.

Our countdown began at 8:30 AM. We made it to 8:00 PM. James threw up again. The countdown reset. We feel frustrated that while something is certainly wrong with James, so far no one thinks it's serious enough to do anything major about. Part of the problem is that because of everything James has been through, there are just so many potential causes it's hard to nail just one down. Residual tumor. Surgery in and around the cerebellum. Blood in his cerebrospinal fluid. Fluid accumulating on top of his brain. Six rounds of general anesthesia. Any, all, or some of these problems would could be the cause. And so we wait.

We're just watching, and if it were up to us, we'd do that at home where we can give him the nausea medicine just as well as they can here. At the same time, we don't want to leave when the kind of complications he could be suffering might worsen and become serious. So here we are.

The one week we thought we had before James' life turned upside down is slipping away one hospital day at a time. Tomorrow is Sunday. We'd wanted to dress James in one of his fourth of July outfits while we still could and take him out. Monday is the Fourth. Our neighborhood has a parade we wanted to take him to. Every day spent hear means one less experience outside of the hospital.

James himself appears to be getting increasingly angry at the hospital. He screams at nurses. He won't let them touch his hands- he's afraid they'll stick him again. He closes his eyes tight at all of us when things go wrong, as if when he opens them again we'll go away. I don't blame him. One of the most frustrating things is that we can't tell him why. We can't explain to him what's going on, or comfort him with reasons. He just knows he's sick, and we watch while people hurt him.

Despite everything though, James continues to be a source of joy to us. One thing that has improved since his surgery is his ability to make noises at us. He's stringing together letters and "words" like he never did before. I think we've heard "ma-ma" and "da-da" several times, though it's hard to tell if he means anything by it other than noise. Still, it's good to see him developing in some ways- and when we can get him to laugh and play, he's such a wonderful baby. We're hoping as soon as we get this one last complication taken care of, James will get back to his normal self again. Our prayer is that no matter what the future holds, nothing about James' self will change. We pray that he will always be at heart the happy, playful boy he always has been. I know that even now his natural disposition helps him weather this experience as well as can be expected. We pray that his treatment will involve a minimal amount of radiation- radiation can damage his mental capacity. We pray above all for healing.

I've gone home for the evening- but only after securing a concession from Kara that if we're in the hospital tomorrow, she's spending the night at home. My original proposal that she spent the night at home was rejected- Kara won on the grounds that her breasts produce milk and mine do not. An effective argument, but I count getting her to agree to take tomorrow off as a victory. We're both hoping we don't have to do any more negotiating on nights in the hospital however because James will be able to come home.

As always, thank you for your thoughts and prayers. The comments, cards, and support we receive daily mean the world to us.

1 comment:

  1. I am a new follower and I have a baby boy that turned 8 months old in June too. I just want you to know that I am praying so hard for sweet James and your family. I will not stop praying for you guys.