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.