Thursday, January 13, 2011

Another day similar to the last two. John was never really good and had one bad spell at around 8pm which lasted for close to an hour  but then he was a little better.
The noontime support worker helped me to get him on our bathroom scales. He could not really stand on them by himself so we had to let go and grab again quickly and so I am not sure we got a very accurate weight - but even if we were only close, he has lost a lot more weight. The weight we were getting was about 98 pounds so we figure he may be just over the 100 pounds. Three months ago he was 113.
I will call the dietician tomorrow to see if we can add  anything else to his feed to get more calories into him. But I suspect the real problem is the times I have to skip feedings because the meds are not working and he needs more meds in place of the protein drink.
I will ask if I can give him more than the 6 feedings a day on the days he is good - after all, there are 11 meds so theoretically I could give him 10 cans of Jevity if I gave him one in between every set of meds.
I may have to ask the neurologist if that would be too much protein for him as that is what nulifies the meds.
The mobile lab came and took his blood tests today. She says they will be coming every 4 months from now on to do that. Very quick and easy. When I think of the hours we have spent sitting in the lab waiting to have that done........

Here is a picture of John in the lift we use to move him around

One thumbs down for tonight.