At a Snail’s Pace

June 28
Progress seems so slow when you are as close to Jon as we in Columbus are. On the plus side Jon is spending more time in his power chair. He gets dressed and into the chair by 1:00, just in time for lunch. At 2:00 he has physical therapy, usually followed by occupational therapy. He’s still working on stretching his neck and shoulder muscles. In occupational therapy he continues to work with pegs and squeezing play dough between his thumb and pointer finger. In addition we are still experimenting with different silverware and eating techniques. By evening his arms are getting pretty tired and shaky. If he coughs with his fork in his hand I try to keep a hand between his fork and chest so he won’t accidently stab himself! After therapy he’s free to roam the place and while my Mother was worried about how fast he might scoot around in his power chair she needn’t worry--the turtle would beat Jon in the proverbial race with the rabbit!

In speech therapy he is working on drawing conclusions--he played a game of “what if...? For example, what would happen if every family in the United States had 10 children? Half a dozen conclusions come readily to my mind!

Jon is still fighting several infections and I guess I need to remember that those things slow a person down. I’ve been really on him for not wanting to eat as much as he should. He thinks he has been exerting himself quite a bit and I suppose if one considers how digestive tract infections can slow a normal person down then he probably is working hard. A wound vac is back on his bedsore--a disappointment to Barb and me since the new bed has such great promise even if one only believes half of what sales reps say.

Wed. July 1
Jon had a really rough day yesterday. His morning blood pressure was 132/83 and should have been a red flag for the staff. I'm not sure exactly sure when it was taken but not at a time when his Dad was there and it could be written down. I don't recall it being high at physical therapy but later in the day he had problems with his catheter being blocked. It was removed but nothing done for about 4 or so hours. Once it was replaced(for the second time in a week) there was still a lot of sediment in the tube and his blood pressure was at 134/65...still high with red flags flying. We followed the rule about sitting up and after a half hour it went back to 116 over 60 something. So we put away the word search we had just completed I laid him back down and said goodnight. (Blood pressure has a habit of going down when sitting in an upright position so when it is more than 20 points higher than normal he has to follow some protecol for lowering it. We had already checked the urine problem and the bowel problem couldn't be dealt with at the moment.)

He had a rough night from what his dad said a few minutes ago and he doesn't really want to get out of bed. That's a big mistake so I'm off to exert some maternal pressure! He's been having problems swallowing and can't really get to a 90 degree upright position and has been having some problems with coughing during eating. The theory being if he was up in the morning he could be in the chair for both breakfast and lunch to see if that was beneficial.