Jim had his first session with the therapist. I had to take him because he's still very weak and I don't trust him driving a car, and he had no idea where this place was and can't punch his way out of a paper bag so he needed to be shown the location. This woman apparently has a very good reputation. The nurses at Kennedy had heard of this place and said to make sure you get Beth because she's the best. Jim's got Beth. She did a lot of measurements and assessments today...like having him say different syllables with this tube up his nose to see if his palate is blocking air from going up into his sinuses (which it does when he says the letter "a" but nothing else)...how much can he open his mouth...can he roll his tongue across his upper lip...all kinds of stuff. Then she told him he has to shave the hair off his neck because she can't use the electrodes on hairy skin. She warned him that she's going to work the hell out of him and he's not going to like it. She needs to see him three days a week for an hour a day. He'll probably be enthusiastic for a couple of days but then he'll start bitching to me I'm sure. She had some good ideas to bring up with his new doctor (because we fired the old one) about how he probably has fluid in his ears because his saliva is getting into his eustachian tubes due to his swallowing issues. He may need to get tubes in his ears like the little kids get. Tomorrow starts the electrodes and the real work.
Tonight I got him to come with me and Pop-pop Joe to Jimmy's Little League practice. He rolled his eyes at me all day about it but in the end he went. I wanted him to come for a couple of reaasons: 1) Jimmy would like his Dad there and 2) I wanted him to meet the guy that was in the car accident and is now wheelchair bound but was able to get rid of his peg tube after therapy. I saw the wife pushing him across the field with some difficulty because she had the dog in tow. I told Jim...."That's the guy"...and Jim went over and helped her push the chair. Here's Jim, very frail- he's down to 153 lbs because he actually got on our scale this morning. He's getting a little scary looking, but he's managing to push the chair. This woman's husband went for therapy somewhere in Philadelphia. Jim actually picked up his shirt and showed them his tube. The wife said, "Don't worry- you'll get rid of it."
He's still depressed and not using all of the food he's supposed to. My mother's yelling at him...his mother's yelling at him...but it's not going to do any good. You can't yell at him because he has to WANT to do it for himself. So I try to reason with him. I try to come up with some line that will make the lightbulb go on in his head. Tonight I tried reminding him of how hard he fought through all those surgeries, and what was it for if he won't follow through with what he needs to do now? I've already tried the "if you won't do it for yourself, do it for me and Jimmy" line but that didn't work. He's got a shrink appointment for early May...it was the soonest I could get him in, but I may have to take more drastic action than that.
And guess who called me today....Miss Dingledong! But someone must have had a talk with her because she had a lot more sense in her head today. Ingrid and I had a bitch session a couple of weeks ago and she contacted some big Dude on the food chain...I don't quite remember what his position was. Miss Dingledong actually claims she's going to check into the $1600 medication that didn't get covered- to give her a couple of days on that, the possibility of getting Jim's tube feed "stuff" covered, and she had an intelligent conversation with me today about the hotel reimbursement. She spoke with Jim's endocrinologist last week. So I guess we're moving along. I never expected a quick answer out of these people. If it takes awhile to get it together, that's o.k., just don't jerk me around.
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