Loopy and loopier

Angelique sure had that last title correct! Evidently Jon has been requesting pain medication too often and really by now I would think that he shouldn't be having much pain at all. However, his new bed, which is doing wonders for the bedsore, does not look like it would be comfortable for sitting. It is like a giant air mattress, but it seems to act almost like it was filled with water, in that there is no support when he's sitting up. At least an air mattress tends to bounce up behind you and remains stiff; this one just seems to envelope him making him look like he's in a U shape, only not that pronounced. They've tried to adjust it so that it doesn't look quite so bad as it did the first few days.

At any rate, methadone is supposed to be a good replacement for any opiate based drug. They had given him a dose Wednesday evening (and then another one early Thursday morning.) Jon and I had not had a good relationship Wednesday. He was back on just a trach without the passy muir speaking valve and had to rely on using short bursts of air to get words out which gives him a brusque commanding sound since he also "gets to the kernel" of the message he is conveying. He also gets your attention with the same kind of "kissing" sound that fellows use to get dogs' attention. Couple that with his need to direct you through every component of a task and you have an idea of how exasperated I was that day. Anyway, Barb spelled me that evening and left me a note in the morning that said Mike, the night nurse, had been reviewing the "please" and "thank you" necessity as well as helping him work through the process of putting his his arms down to his side. (For some reason he seems to think they lock up half way down--Mike told him to turn his wrist inward and then they go down easily on his own.) So when I went in Thursday morning and Jon gave a big grin and greeted me with "Mom, come... here! I...want... to... hug... you!" I was absolutely ready to worship Mike. I was so overwhelmed I had to go out to the hall for a few moments to compose myself. When I went back into the room and that request was repeated as if it had not been made before I was suspicious. It seems he had been in that happy state for a couple of hours. As the day wore on happy went downhill to fighting with demons. I hardly left his side the rest of the day and evening trying to get him calmed and reassured his world was not coming to an end.

The next day the speech therapist said he could have his passy muir valve put back onto his trach. He was so used to speaking so forcefully that for the first 10 minutes or so he yelled instead of talking. Silly me, I finally suggested that perhaps he should sing his answers instead. The singing never stopped! Most of the time I didn't recognize the songs and quite often he was just singing monotonous phrases--over and over and over. Occasionally it was interrupted by sudden fearful looks at the clock. I did however, get a chance to read quite a bit of my book "Three Cups of Tea" that my book study group is reviewing. (It's quite a good book about an American mountain climber who decided to build schools for girls in Pakistan and Afghanistan.)

As Angelique put it this week-end the best that could be said was that Jon was loopy. Barb reported to me this morning that he was still talking well into the night but that it was much calmer. I came home Saturday afternoon and will be going back down tomorrow (Tuesday) and taking Carol with me so Jon is in the hands of Barb and his dad. Before I could get home Saturday Barb called with a question about Jon's blood pressure. It seems that it had been extremely high at one point in the day and then dropped to just about half both numbers. I haven't been keeping the kind of records I did for her last January and they haven't been volunteering that info so I didn't really know what normal for him has been--needless to say we are starting to take copious notes--Bill's notes the last few days have been far better than mine. He's now on high blood pressure medication. I'm not sure I like the fact that he has different nurses every day. The continuity in care just isn't there.

I've started to ramble so I'll just say--Thanks for tuning in....


P.S. He passed another swallowing test so he is allowed to eat but he either acts likes he's falling asleep in the middle of a bite or is asleep and we haven't felt comfortable with pushing food. I think he was doing better Saturday when I left so hopefully he's doing better in that regard.