Tug of War

Yesterday we did standing and walking, and more standing and walking, and more and more standing and walking. Yesterday was a long day. This past week has been a long week. And at the end of a long day, a long week, what better is there than a long, hard, peaceful rest?

James slept, without meds, for a full 9 hours last night, from 7 to 4 am. He has been awake ever since, and is looking happier and more James-like every day. We even got a James-original smile yesterday!

Medically, though, we are still playing tug-of-war. 

Tug-of-war was always one of my favorite family reunion and summer camp games. Two teams vying for victory over each other through a balance of weight, strength, and strategy. I think I liked it most, however, because who won wasn't always about the strongest or heaviest or most strategic: sometimes luck, or sheer will, or environment had a silly way of turning the tides. 

Despite the improvement often seen (~60%) through the conservative three-part treatment plan James is on -- TPN (i.v. nutrition), Octreotide, a medication used to slow the flow of lymphatic fluid, and no food or drink, all for up to 2 weeks -- James' condition still has yet to improve in the last week. There was a marked improvement in the first few days of this plan -- last Thursday, Friday, and Saturday -- down from about 800 cc's per side per day to about 150 cc's per side per day.  But then not much happened, so they took him off Octreotide to see if he just needed time to rest, recover, and start walking.

After a week and a few days, we're averaging about 200 cc's total, or a cup, per day for the last 3 or 4, but it has been fluctuating up and down, up and down. Progress, but progress has slowed, and sometimes reversed, so docs are gonna put James back on Octreotide. It should only take a few days for this treatment to do something noticeable, and we're hoping both that this plan will help and, more importantly, that James will be patient enough to get through Tuesday without eating or drinking anything.

This past week, James has been continuing a very long and hard game of tug-of-war -- he pulls a little, his condition pulls back a little. He's not happy about being here instead of home, being forced not to eat, or having all his i.v. tethers and these hospital walls keeping his freedom of movement limited, but every day he keeps playing this game of tug-of-war.