July 29, 2017 11:00 pm
Today was Saturday so Josh didn't have any classes or other planned activities. This presents a challenge for us as we try to keep him relatively occupied and active all day long. We did get a lot of help today from his BA, Sonam (from Nepal). She was great and did a lot to help Josh through the day.
When we got to the hospital this morning, we were quite alarmed by Josh's situation. He seemed to be a lot more disconnected from the world around him than in recent days. He sat with his breakfast and pushed his eggs around his plate with his fork for about 30 minutes or so. After that, he just didn't seem like he had much energy or interest in anything. He peddled around the floor in his wheelchair for about an hour or so with Paul in tow, but he was consumed with staying as close as possible to the left side of whatever hallway we were in and kept trying to enter every room we passed. The behavior was a bit alarming. We were informed that he slept well last night, so apparently lack of sleep wasn't the problem.
We both concluded, independently, that the behavior was probably related to the hydrocephalus (water on the brain) problem that Josh has. Any swelling of the brain inhibits function, so this was our lay diagnosis. And we are concerned that this problem can't be fixed until the doctors drain his ventricles with a shunt, which can't be put in until his synthetic skull is produced. We've been told that will be almost two weeks from now, so this causes us a great deal of concern.
This afternoon Josh participated in an activity where he made tie dyed shirts for himself and Mary. Because he wasn't particularly lucid, all he could do was cooperate with the staff and do as he was instructed. We'll get those shirts tomorrow.
Today was Saturday so Josh didn't have any classes or other planned activities. This presents a challenge for us as we try to keep him relatively occupied and active all day long. We did get a lot of help today from his BA, Sonam (from Nepal). She was great and did a lot to help Josh through the day.
When we got to the hospital this morning, we were quite alarmed by Josh's situation. He seemed to be a lot more disconnected from the world around him than in recent days. He sat with his breakfast and pushed his eggs around his plate with his fork for about 30 minutes or so. After that, he just didn't seem like he had much energy or interest in anything. He peddled around the floor in his wheelchair for about an hour or so with Paul in tow, but he was consumed with staying as close as possible to the left side of whatever hallway we were in and kept trying to enter every room we passed. The behavior was a bit alarming. We were informed that he slept well last night, so apparently lack of sleep wasn't the problem.
We both concluded, independently, that the behavior was probably related to the hydrocephalus (water on the brain) problem that Josh has. Any swelling of the brain inhibits function, so this was our lay diagnosis. And we are concerned that this problem can't be fixed until the doctors drain his ventricles with a shunt, which can't be put in until his synthetic skull is produced. We've been told that will be almost two weeks from now, so this causes us a great deal of concern.
This afternoon Josh participated in an activity where he made tie dyed shirts for himself and Mary. Because he wasn't particularly lucid, all he could do was cooperate with the staff and do as he was instructed. We'll get those shirts tomorrow.
As you can see from that picture, Josh's right eye opened a little more today. It's about 1/3 of the way open now, but he still can't see anything through it.
By the afternoon -- after some lunch and good nap -- Josh rallied a bit. He seemed more connected and was higher functioning. Sonam pulled out one of the whiteboards Mary bought and she drew a circle. Josh made a person out of the circle. He even added hair to the second circle she drew. The last three circles, he drew the bodies and faces, but she drew the hair. Mary asked if she was one of the people Josh drew, and he nodded that she was. She asked which one, and he pointed to the last drawing. She asked if Paul was one, and Josh said yes and pointed to the last drawing. Mary asked if Eden was one of the figures, and Josh said she was and pointed to the last drawing.
Later in the day, Mary pulled out her tablet and downloaded some dot-to-dot games for Josh to work on. Sonam helped him for a while, but then she had to go home. We tried to keep her at work, but she left anyway.
Josh is unable to do dot-to-dots. He can't follow the number sequence. He just goes from dot to dot hoping it will complete on its own.
In the early evening he seemed quite connected but also sad. We asked him if he was OK and he shook his head "no." We asked if he was sad and he nodded "yes." So we both talked with him about it, then Mary took him out for a short walk and "played" Connect Four with him before getting ready for bed. (He doesn't understand the point of the game, and that strategy would be too high level for him anyway, so he just put the plastic coins in the slots.) That seemed to ease his doldrums somewhat, but not completely. Josh doesn't show a lot of emotion, either happy or sad, so when he does, we try to focus on it with him.
Mary's high school friend Andi Kogan has lived in Denver for nearly 20 years and has come over to the hospital twice to visit. It's nice to have a visitor, and we don't know many people in Denver!!
The worst news of the day is that the free ice cream machine at our apartment is broken.
Sigh. I hope we don't have to go without free ice cream for very long! ;-)
By the afternoon -- after some lunch and good nap -- Josh rallied a bit. He seemed more connected and was higher functioning. Sonam pulled out one of the whiteboards Mary bought and she drew a circle. Josh made a person out of the circle. He even added hair to the second circle she drew. The last three circles, he drew the bodies and faces, but she drew the hair. Mary asked if she was one of the people Josh drew, and he nodded that she was. She asked which one, and he pointed to the last drawing. She asked if Paul was one, and Josh said yes and pointed to the last drawing. Mary asked if Eden was one of the figures, and Josh said she was and pointed to the last drawing.
Later in the day, Mary pulled out her tablet and downloaded some dot-to-dot games for Josh to work on. Sonam helped him for a while, but then she had to go home. We tried to keep her at work, but she left anyway.
Josh is unable to do dot-to-dots. He can't follow the number sequence. He just goes from dot to dot hoping it will complete on its own.
In the early evening he seemed quite connected but also sad. We asked him if he was OK and he shook his head "no." We asked if he was sad and he nodded "yes." So we both talked with him about it, then Mary took him out for a short walk and "played" Connect Four with him before getting ready for bed. (He doesn't understand the point of the game, and that strategy would be too high level for him anyway, so he just put the plastic coins in the slots.) That seemed to ease his doldrums somewhat, but not completely. Josh doesn't show a lot of emotion, either happy or sad, so when he does, we try to focus on it with him.
Mary's high school friend Andi Kogan has lived in Denver for nearly 20 years and has come over to the hospital twice to visit. It's nice to have a visitor, and we don't know many people in Denver!!
The worst news of the day is that the free ice cream machine at our apartment is broken.
Sigh. I hope we don't have to go without free ice cream for very long! ;-)
Hi Paul and Mary, did you know that Eric Richards, Liz and Preston's son, lives in Denver? And he's a doctor (infectious diseases I think). You know that if you needed help with anything he would be a great resource.
ReplyDeleteThanks, Grace.
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