It's a perfectly beautiful day in Houston, cool and clear. From the vantage point of our room, we look north in the foreground across an older residential neighborhood to Rice University. The live oaks below us are getting their new growth, birds are everywhere. I imagine I can see the Spring migration before my very eyes. This afternoon, if we can overcome obstacles such as nurses' concerns that there is no doctor's order permitting it (will the doctor come in time to "write an order?"), Richard and I are planning a trip out on to the vast emptiness of the open air portion of the parking garage situated just below our room. It is hard to have to negotiate so much with people on whom one is so dependent. But I am convinced that on balance the staff at Select Specialty is genuinely trying to help us. Nothing is perfect, but I will say this for them that, when mistakes are made, it is taken as an opportunity to try to do better next time around, no one is trying to say nothing has happened.
I have delayed posting this week hoping that I could report Richard's move to the Texas Institute of Rehabilitation and Research (TIRR). But Richard hasn't been able to move over because (1) his red blood count had dropped below acceptable levels, and (2) he had a low grade fever for several days. We were supposed to move last Tuesday, but couldn't for these reasons. Same on Wednesday, then Thursday, too, and then Friday also. This was profoundly depressing as each day passed. We have now been at Select Specialty for more than four weeks, 7 1/2 weeks since Richard went into the ICU at M.D. Anderson. But yesterday, Richard received two pints of blood and had no fever, no fever today. One of his doctors who came in today said maybe tomorrow TIRR will say he's okay to move over. TIRR is a rehab hospital, and although its patients have medical issues, they must be sufficiently stable that they can engage in rehab. Richard has continued this week with physical therapy (basically leg exercises and walking), occupational therapy (basically arm exercises and motor control), and speech therapy (swallowing exercises designed to improve his ability eventually to swallow -- thus eat and drink by mouth), but he had to step down the scope of his effort. TIRR doesn't want to have the focus of its efforts with Richard be what to do about his red blood count and where his fever is coming from. Hopefully, they will be satisfied with his condition and readiness for rehab this coming week.As we have stewed this week unable to make the move, we have focused increasingly on how we could just get home to New Orleans. None of this would be simple. The seven hour trip by car or even by ambulance seems out of the question. We are beginning to investigate the cost of air ambulance, plane or helicopter. But the more basic question is what we would do once at home. Richard is on a waiting list for Touro's rehabilitation hospital in New Orleans. We have gone over and over what it would take just to go home to our house, no TIRR, no Touro. Our dear old friend George Strickler visited us this weekend from New Orleans. George's now deceased wife Carolyn struggled with MS for years, and George is very knowledgeable about what it takes for a person with disabilities to be at home. He has offered much help for which we are so grateful. But the exercise of trying to think it through has brought home to Richard how much at this point he really needs the support of hospital staff. This leaves us hoping and hoping that TIRR will do right by us this next week.
But meanwhile, as I have been writing this blog, the pieces for the trip outside have been coming together. The respiratory therapist will get us a full tank of oxygen after her lunch. Richard's nurse today has agreed that there is no reason he needs to trail along his food (bottle on a pole) for the time it takes to go out for a while. So we are hopeful of experiencing this afternoon the first moment of relative freedom in the sunshine since early January.
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