Since John slept most of yesterday, I thought he would likely be asleep again this morning so I went to church before I went to the hospital. Turned out he had not been asleep, and had been calling for me for some time. He was quite disturbed and I understood why when he pointed to the apparatus beside his bed that they use to pump his feed into him during the night. It was running. This meant that he was being given protein feed right up until the time of his Parkinson's meds and that is what we always try to avoid as they conflict and the protein prevents the sinemet from working properly.
I called the nurse and she was quite brusk, and said that his sugar levels were down, and since I had not been there to feed him, they had put the pump back on. (In other words, it was my fault). Now whenever his sugar has gone low before the nurses have just given him some glucose to bring it back up. So when it was so close to meds time (they were acutually late with the Parkinsons meds) they did not need to give him the protein feed. When the next nurse came on she was much more understanding and recorded it in their log and said that it would not happen again. Anyway I have asked for a consult with the dietician tomorrow to see how best to work this all out. It may mean I really need to give him more tube feeds with the syringe during the day. I won't go into all the details about how and why this needs to be done but I need to talk to the dietician about it.
Anyway, he got through the next 90 minutes with only a slight problem of the meds and feed conflicting (mainly too much mucous) he had very few problems with the muscle spasms and cramps which was a real blessing, and only some mild sweating. But he was much more agitated and unable to communicate today. I suspect it is a result of the heavy pain killers he is on. But he spent a lot of time staring at the ceiling and 95% of what he said, I could not understand - for the nurses it was more like 100% So he was getting more and more frustrated and we could not figure out what he wanted or needed.
He has speech aids, pictures, alphabetical letters etc to point at but he cannot seem to concentrate long enough, or point accurately enough at them to use them either.
At 7:30 tonight he was extremely restless and he asked me to ask the nurses to give him his sleeping pills because he just wanted to go to sleep for the night. He was sound asleep and snoring (but his eyes were still open - wierd) when I left at 8:30pm.
Margie came over and visited this afternoon and brought me a Tim Horton's coffee and a Quizno's turkey sub. That was a lovely change and I appreciated it very much.
I will go to the hospital early tomorrow morning in hopes of catching the doctor on his early rounds.
We really need God to make a way where there seems to be no way!!!
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