We were allowed to take J home for the weekend. This decision is where medicine takes on some of the personal biases of the doctors. We have three pediatric oncologists. Last week they rotated the inpatient coverage on a daily basis, which doesn't impact the main treatment plan, but can lead to a little inconsistency on the minor details.
OK, a little medical background: One of the serious problems they watch for is the tumor lysis syndrome. Basically all those cancer cells that are being killed (and probably healthy cells) split open and dump their insides out. Several of the things being released can lead to damage to the kidneys. The kidneys are one of those organs essential for life. If they don't work then we have to figure out how to do their work for them. One of their important functions is to help maintain electrolyte balance. Take potassium for instance. Potassium mainly stays inside the cells (there's a lot in the body), but when it all gets into the blood and the blood levels get too high, certain electric tissues, such as the heart, get irritable, and may stop working correctly, or working at all. Kind of important to keep tabs on. The solution to this pollution? Dilution! Wash the body out by flooding it with fluid and rely on the kidneys to do their job (which are already at risk of getting damaged from other junk being released when the cancer cells are killed). J was getting about 3 1/2 Liters of salt water through his IV every day, and he was peeing constantly. All good news (except he was on steroids and he would sometimes cry about having to go to the bathroom)
About Thursday (treatment started Tuesday) they said he could potentially go home on Friday, but J would need to drink at least a Liter of fluid every day (right around 8 cups, not bad). We were excited to potentially go home. Friday came, different doctor on service. Now we were told, J is not drinking enough. He needs to drink a Liter of fluid while he's in the hospital before they would think about letting him go home. The only down side, they didn't slow down his IV fluids one bit. You try to drink 8 cups of water when you have totally eliminated your thirst. J wasn't that interested in it either. I thought for sure we would be stuck in the hospital all weekend. Saturday came and a different doctor was on service. J was discharged, we just had to ensure he drank enough over the next 24 hours or we would have to bring him into the emergency room to get fluids. At least this was a plan that allowed us to be home.
We were home. He had no IV fluids running. Getting him to drink was like pulling teeth. We had to threaten him in the end that if he didn't drink enough, he would have to go into the emergency room and they would have to place an IV to get fluids in him. Eventually he came through, probably out of fear of another needle stick. It was a struggle all weekend to get him to drink.
He did make some other improvements. He finally agreed to change out of his hospital gown and put clothes on. He's been worried about tight things pressing on his incision (which is low in the pelvic region). He had decided he could live his life in a hospital gown. One of his friends agreed that was about the best arrangement ever. Little boys! We had to manipulate him a bit to get him to change, promised to learn to play a new board game with him, but he changed and became a little bit more normal. Except he hated the underwear pressing on the incision and went commando. I'm sure he's happy that everyone will know:)
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