A day for “hey” (Monday)

Monday, Wiley not only got to lose his oxygen-assist mask, but he got to have a bath. Well, the kind of bath you get to have when you are still pretty well restricted by tubing to the confines of a hospital bed, but a bath, nonetheless. It’s a definite sign that things are going better when the ICU nurse finds time for clean up and is not completely preoccupied with tracking the ups and downs of all the monitors. In fact, at this point, Wiley is down to a paltry five or six monitors, a very respectable number, but one that looks nearly inconsequential compared to the bank of them he had going before.

Wiley’s parents have been on a campaign to try and give him an opportunity to rest – not a high priority for the ICU, generally, but one they think makes sense given what he’s been through and the substantial effort that they can see it takes for him to be present and engaged in his surroundings in any way. Yes, they even get the nurses to turn out the lights sometimes!

Wy has continued to keep his eyes closed most of the time, and is just beginning to verbalize in a way that is recognizable with more certainty than conjecture. A couple of Monday’s interactions were of note. At one point in the day, his Grandma Esther was in visiting, and he reached up to touch her face -- the first specific reaching out to another I’ve heard of. Then in the evening, he had his first in-person visit from long-time best friend Sean, and they had a full teen-aged boy conversation: “Hey,” said Sean. “Hey,” responded Wiley. Nancy, who was also there, explained to Sean that they had brought in the piece of leopard-skin fabric that Wiley had at his side (remnant from a jacket-decorating project he’d carried out a couple of months ago) because he seemed to like having something in his left hand, and the sheet he’d been fingering had been replaced by a pair of pajama bottoms. Wiley’s response to Sean? “I don’t even care.” The boy’s looking for some dignity, Mom!

An occupational therapist friend told me yesterday that injury to the lower back part of the skull often resulted in a lot of visual sensitivity due to the part of the brain affected, and that may be part of why Wiley continues to keep his eyes closed so much. She also said that a typical response to sensory overload for brain trauma patients is to go to sleep. So both those factors may be part of what’s going on with Wiley right now. It may also be due in part, of course, to his continued medication for pain; they switched him Monday from morphine to another, so his behavior may also change a bit out of that.

Conversations are continuing about his rehabilitation center placement. His neurosurgeon expects him to stay at Memorial Hospital for about another week, and then go to a live-in rehab center. Once again, it seems the case manager is talking about sending him out of town to Sacramento (UC Davis), San Jose (Santa Clara Medical Center), or Oakland (Children’s), each of which have pediatric rehab centers for traumatic brain injury, or TBI. (Wiley would still have the bone flap missing from his skull when he left, and would use a helmet to protect his brain for about the first week. Then he’d have a surgery to replace it, possibly via a temporary ambulance transfer back to his neurosurgeon and Memorial Hospital.) Nancy and Tim are doing their background research to find out which one seems to offer the best circumstances for Wiley, and they are ready to do what it takes to get him there.

[You may notice that this has been posted Tuesday morning, rather than Monday evening. That is likely to be my continued pattern, as I am returning to work myself and will probably write blog entries on the bus on the way in to San Francisco in the mornings, the better to incorporate all the news of the day without staying up so very late!]