Indecision

Kevin’s lab work for his blood has improved to almost normal levels. Kevin is also improving physically. His movement and control of his left side is getting better, and his stamina for sitting up in a chair is also improving. Both Saturday and Sunday we got him outside twice in the wheelchair. He still enjoys looking at the cars parked outside; there are some nice cars in Palo Alto!

As Kevin improves and the doctors are winding down the medications, his personality, especially his stubbornness, is returning. It’s wonderful that it looks like most of the old Kevin will come back. However, at times it is very frustrating to deal with the real Kevin, who, we all know, loves to debate everything! Furthermore, the steroids exaggerate his argumentativeness. Kathlin also enjoys debating, unlike Kevin’s sister and parents, and Kathlin has always been much better at arguing with him than the rest of us. So once again, on one more count, Kathlin is a totally indispensable part of “Kevin’s posse,” as the attending physician has labeled us.

This attending physician, whom we like very much, by the way, has also informed us that Kevin will probably move out of Stanford sometime this week. A couple weeks ago, we heard that the health insurance company was pressuring everyone to get Kevin out of Stanford, but Kevin wasn’t ready to be moved at that point in time. This week, since Kevin’s bloodwork has stabilized and his motor skills are improving, moving out of Stanford seems like a more realistic possibility.

There are two options that are being tossed around. Option 1: Kevin may go to the Santa Clara Valley Acute Rehab hospital, where he will receive more physical, occupational and speech therapy than he gets as an inpatient at Stanford. Santa Clara is reportedly an excellent facility, and Kevin would receive amazing rehab that will help him recover. The radiation is the most important thing at this point in time; second, Kevin needs lots of therapy to regain his strength, stamina and control. Rehab hospitals shoot for 3 hours of rehab a day.

The problem with Option 1 is the transport; Kevin would have to be transported (by an ambulance or other medical transport) back and forth from Santa Clara to Stanford every weekday for radiation. If the transport people drop Kevin off at Stanford and don’t wait around for his 15-minute radiation appointment to finish, the trip up and back to radiation could take 5 hours (seriously), and that leaves little time in the rest of the day for rehab.

Option 2: We may move Kevin into an apartment literally across the street from Stanford’s Cancer Center. It would be a very short distance from the apartment to radiation. However, it would be a big step to have no nursing care (though Kathlin is an excellent private nurse), and Kevin would still not receive very much therapy. If we did this, we would hope to move into an Acute Rehab Unit as soon as Kevin no longer has to be at Stanford every weekday for radiation.

This decision is a huge exercise in communication. If we thought the communication was rough before—amongst doctors within one hospital—that was nothing compared to trying to get doctors from two hospitals to talk to each other and come up with a solution! We are trying to be very patient and make our wishes clear to every new doctor or caseworker who shows up at Kevin’s door. I’ll put the call out there again: if anyone wants to devise a system to make all these brilliant minds (and I’m not being sarcastic here, I mean that seriously) talk to each other, you’d be able to make your million!