Sunday, March 11, 2012, Texas Institute of Rehabilitation and Research (TIRR), Houston, TX


Richard finally arrived at TIRR (Texas Institute of Rehabilitation and Research) late last Monday afternoon.  He was dressed in his hospital gown and sported his oxygen hose, his urine bag and continuous feed to his stomach tube.


Tuesday morning, the TIRR staff took out the "Foley" (one tube/tether gone), discontinued the oxygen to Richard's trach (second tube/tether gone), began "bolus" (intermittent) feedings (third and last tube/tether gone), had him dress in regular clothes, and issued a wheelchair.   The transformation was remarkable.  TIRR's attitude is you can be a regular person and you may/must develop independence whatever the challenges.

Much of the first week was spent in evaluations.  Richard was asked what he wanted to get out of his stay at TIRR, and he said he'd like to be able to walk on his own and go home.


The routine of speech therapy focusing on swallowing exercises, occupational therapy focusing on the mechanics of every day activities and how they may be accomplished from a wheelchair or balanced against a walker, and physical therapy to strengthen all the muscles in his body, most particularly his legs and arms, was established right away.  (In the photo below, Kristi is not holding Richard up, but rather merely reassuring him that he is balanced.)






Richard loves gyms, and when he first walked into TIRR's main gym with all its equipment and dozens of therapists working with all manner of patients, his eyes were as big as a six year old's Christmas morning.  He has an exercise card on which he and his therapists have written down what machines he can work on and at what level.  The machines are pretty much the same as those Richard has worked out on for years.  In addition to the daily sessions with his speech, occupational, and physical therapists, Richard has an exercise period.  A group of therapists is assigned to help patients move from from machine to machine.




Wednesday, his third day at TIRR, Richard walked with a walker down a long hall, out the front door of the hospital, across a slightly bumpy, uneven driveway, up a shallow handicap ramp at a corner, and then back again.  Once back in the gym, unassisted except for sturdy railings on each side, Richard walked up four regulation-sized steps, turned around and walked down.  For weeks, we have been wondering how he would manage the six rather steep steps up to our front door.  Now the answer is clear: he'll walk up them.


Also on Wednesday, we went to a meeting of the team of people working with Richard to hear their assessment of his situation and thinking about how long it would take him to meet the goals he had set for himself.  I was totally non-plussed to hear them say Richard's tentative discharge date is Friday, March 16, that is next Friday!  Richard didn't hear it that way, nor did his nurse who went to the meeting with us.  But almost right away, our case manager came by to visit to begin helping us plan for his discharge next Friday.  All this is rather abrupt, and I have to say I panicked at the thought.


I think in terms of his ability to get around, to transfer from bed to wheelchair or walker, etc., he's ready to go home, but I'm concerned about his trach and the status of his ability to swallow.  His TIRR doctors say they won't make him leave until after his trach is out, but the process leading up to removal of his trach has not yet begun and even when it does begin it takes a few days to get to the point that they remove the thing.  I'd like there to be a decent period after the trach is out to make sure everything is in order before we go home.  The period leading up to the reinsertion of a trach after it was removed the first time around was pretty hairy.   Similarly, Richard's regaining the ability to swallow is such a big thing.  He is supposed to have another swallow test this week before we go home.  If he passes, he will begin taking soft foods and water by mouth.  If he aspirates anything into his lungs, he runs the risk of pneumonia again.  I'd just as soon he went through the initial period of taking food/water by mouth with medical help nearby.  I have expressed these concerns, and I think it is likely the discharge date will be kicked over into the following week (week of March 19).  We left home December 9th, and believe me we are both ready to go home.  I would love nothing more than to sleep in the morning until I wake up, to make a cup of coffee in my own kitchen, to help Richard in the confines of our own home, to see our New Orleans friends.


Richard's physical therapist has gone over all aspects of our situation at home, and has made recommendations for and will write prescriptions for all the equipment he needs.  The mostly young therapists who work at TIRR are really, really good.  They understand exactly how to do the critical things a disabled person needs to do, e.g., move from bed to a wheelchair, and exactly how to explain it.  In order to be a therapist here, one must have a doctorate.  (There are also wonderful, well-trained assistants who do not have doctorates.) 


On Friday, Joanna Sobol McCallum came from Los Angeles to visit her father.  This is Joanna's fourth trip since Richard fell sick.  The other three were when he was in M.D. Anderson's ICU. The last time she saw him, he couldn't move his arms or legs.  It was an emotional reunion, and we were so glad to see her.  We spent some of our time together taking pictures, and here are some.

Sunday, March 4, 2012, Select Specialty Hospital, Houston TX


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.