Overdue Update

My apologies for not keeping up with the posts. Barb had loaned Carol her computer so she could chime in once in a while and she’s only been there once this week. I have been there every day with the exception of Thursday but by the time I get back home I’m beat. Received a rather comprehensive report yesterday and unfortunately did not have my infamous notepad with me to take notes--didn’t realize how extensive they would be either. As of yesterday Jon has a passy muir speaking valve that can be put on his trach. This valve should allow Jon to talk again making communication so much easier. It seemed uncomfortable so he only had it in for a short time. (OSU has a short pdf. file on the Passy Muir valve but I don’t know how to incorporate it here.) It should help with the amount of secretions he has and improve his swallowing capability.


He has another “bug” or maybe a reoccurrence of an old one. Was running a fever on Tuesday which kept him down. My visitations have been late in the afternoon and he’s rather tired then. Loooooves to have his head scratched...harder comes through loud and clear even when just mouthed! On one visit he actually did have on a shirt I had brought. I should have know better than to bring one of his own button down shirts. He needed one much larger, but then I always wondered how they were going to get arms in and out of the sleeves. That was the only day--but then 2 days later I took all the shirts home, what the heck! Actually the nurses don’t seem to be in agreement. One will suggest dress shirt styles, others large V-neck tee shirts and one, bless her soul, even said she didn’t see how they expected to put any type of shirt on him! He has worn the jersey knit pants though. We joked about how he never in “real life” would have worn them.


He has been sitting in a wheel chair especially adapted for halos for 2 to 4 hours at a time. I believe one day it approached 6. He’s been out of his room several times. They may park him near the nurses station which would ruin my sanity. The patient call buttons sound a lot like the telephone ringing and “have to be loud so the nurses can hear them wherever they are.” Which is fine if it were possible for them to reach the patients a little speedier. A constant ringing sends me into a straight jacket condition and guessing from Jon’s attitude that day it doesn’t do much for him either.


They are using some hoisting device to get him out of the bed and when he masters sitting and balancing himself on the side of the bed they will start using a transfer board which is supposed to allow him to do more of the work(?)


Today, he has had a lot of company. Barb and her Dad were up to see him and their Aunts Ginny and Jeanne were there as well as their Uncle Dick. I’m sure his time was well occupied. His Dad said its time for another haircut, oh joy, oh joy. Trying to do a decent job working around the bars of a halo is really some trick. A shampoo of sorts is in order also.


Will try to get reports out in a more timely fashion in the coming weeks.