De-intensification

Henry continues to improve steadily, in every area except his insanely itchy rash. We had the dermatology team come by yesterday to offer their opinion. They seem to think that it's related to one of his medicines. Since he's been on over a dozen since he's been here, it's really anyone's guess. The bottom line is that it doesn't appear dangerous, and we'll be putting a steroid cream on it for the next several days. It's still driving him nuts. Fortunately, it doesn't keep him awake, but during his waking hours we are constantly applying some sort of soothing lotion.

He still has some pain, especially related to his mouth and throat. I saw a small amount of blood in his mucous once yesterday when he coughed, but overall his mucositis is already just a shadow of it's former self. It humors me in some way that now when he gets a small string of drool on his cheek he flips out, where just a few days ago he was lying in a pool of it without noticing or caring. It is truly remarkable how quickly those symptoms have improved.

Our goals now are to de-intensify his regimen, to move to hospital discharge. We need to remove his antibiotics one by one to make sure he doesn't resume a fever. We need to gradually turn down his morphine drip while making sure that his pain is controlled. We need to work toward getting him more physically active, out of bed a little bit, but I think that will be the easy one. The spirit is willing, the body will follow when you're three. This will all take several days, but we're hoping to be out sometime around the weekend.

We also found that Henry was very demanding yesterday, and very grouchy. There were a lot of tears, a lot of tantrums, and even hitting, which he never does. He had ups and downs, and we were able to spend some time playing games and talking pleasantly. It's sad to see him so angry, and I wonder what is going on in that little head. Is it anger at what we've done to him, or just the grumpies from one of his meds? We'll never know. I do know that if one of my children acted this way on a normal day at home, I'd be ready to sell them to the gypsies. Yesterday I took great pleasure in watching him use those muscles to kick, his voice to scream, his arms to throw things. Just two days ago I couldn't have dreamed of him having the strength to do any of it.