Same stuff -- different day

It has been over a week and nothing has changed -- just more surgeries and more CT scans. Saturday night was another night at the hospital waiting for surgery. The two hour surgery ended up taking four hours and Jhonny now has two shunts in his head, as well as a four catheters to drain the liquid from his brain. A feeding tube was going to be inserted at the same time but the doctor failed to show up so that was done on Monday.

Today Jhonny was moved to another part of the hospital -- into isolation. He has pimple-like spots on his body and they are not sure what is causing them. His room is very nice but he isn't enjoying it. He still is not responding except to noise and touch.

Because he has been in bed and inactive for so long his limbs are atrophying. It is very hard to move his legs at the knees although moving them does bring about a negative reaction. His hands are clenched, rigid, and bent backwards. When he lays his body is arched and his head lays at a peculiar angle. No matter how many times we straighten out his body it returns to that angle. His teeth are clenched and he often is grinding them.

It is hard to go every day and see no change. It is hard not to be discouraged. This is also affecting Erselia and she was very eager to go home for a day this week. It is the first time she was willing to leave the hospital for any length of time. We left Tuesday night and came back Thursday morning. Erselia was able to spend a day with the rest of her family and enjoy the Independence Day celebration in the community.

When we came back today Erselia and I talked about the future and she said she did not want Jhonny to continue to suffer. They want to know what his quality of life will be before they continue with more treatments, especially radiation. Our new challenge will be to get an answer to that question.