July 26, 2017 9:30 pm
Bad news. Josh's lava lamp broke today. It's only a week old, and it gave up the ghost. Things are just not made as well now days as they were in the past.
Josh had another busy day today. (Tomorrow's schedule looks much less busy, so expect a short entry then.)
Josh got up and had breakfast (in his PJs). He still loves ketchup. Ketchup on his hash browns, on his eggs, and he even dipped his strawberries in it. I'm okay with it though. Ketchup is basically a low-calorie vegetable that's good in vitamins A and C, so I say, "You go, Josh!"
OT came at 8:00 to help Josh get dressed. He often gets his shoes on the wrong feet, but Josh can mostly dress himself now. Because it took him only 30 minutes to get dressed, the therapist worked with him for 30 on matching cards, building blocks, and drawing.
Then Josh had ST. The Speech Pathologist is trying to get him to remember new information - his teacher's names, what they do, how to get from one place to another. But he cannot do it; he physically CANNOT do it. He has PTA, so this is extremely frustrating for him. This is the "class" he hates most. But I consider today's class a success because it's the first time he didn't fall asleep in it (and it was fairly boring).
Neuropsychology was next on Josh's list. Dr. Schraa reviewed with us Josh's MRI scan from yesterday. I have been unwilling to look at them, but I did today. I understand why called his injury "devastating." I'm no doctor, but I could tell there was serious damage. The two sides of the brain aren't equal sizes, and they don't look the same.
The first place Schraa pointed to was the frontal lobe. He said that it is Josh's emotional center. It controls happy, sad, etc. Later, speaking of this particular image, he said, "Josh seems like a very likable young man." I agreed and added, "He's easygoing." Schraa said, "Most people with his injury would be angry and possibly even violent. You're lucky." I am thankful that Josh isn't those things, and I know I'm not lucky - I'm blessed. He told me that the damage in this area of the frontal lobe explains why Josh is unable to pay attention, why memory is so difficult, why he can't cry, and why he has to labor so hard to talk. "But he has important things on his side. The most important thing he has is you. Your support - being with him and helping him through this - will help him to recover more than any other variable in this equation. You are here. All our patients don't have that. It's obvious that you love him, and that will make a huge difference in his success. The second thing he has going for him is that he is still young. If this injury were to happen in someone who is 40, it would be much more severe. And the third thing he has going for him is time. We are still at the beginning; only one month in. He will still improve."
Then Schraa showed us a left-side injury. He said that was the place that people use to formulate, organize, and express their thoughts and ideas. This is why Josh uses head movement instead of words, and why he is unable to generate ideas of his own.
Then he showed us the "frontal and temporal injuries." These injuries decrease motivation. Schraa said that Josh finds no point in conversation, no impetus to go anywhere, will have a hard time tolerating frustrations (although Josh sat through this meeting, which had to be frustrating to him), and will be restless (why he is constantly moving in his wheelchair). But this injury will cause him anxiety, like he is always needing to be somewhere but can't figure out where.
He showed us that Josh's frontal lobe is still swollen from the original injury. He also showed us "recent" swelling in the ventricles. Josh is regressing in some ways - he used to be able to do things that he can't do now (draw a clock, use the restroom when needed, etc.). Schraa said that the swollen ventricles could contribute to this regression. I hope so.
Our meeting with Schraa was supposed to last 30 minutes, but ended early. He promised Josh he would change his approach since what he has been asking from Josh is far above his capability. Then we walked the halls for awhile and ended up in Josh's room. Schraa looked at the pictures on Josh's cork board. I took down a picture of Josh's grandparents and said, "Do you know who this is?" He has identified Grandma a number of times, but never Grandpa. He nodded his head yes. I asked, "Who is it?" He said, "Grandpa."
Schraa left and I got Josh into bed. Seconds later a transport team showed up with a gurney. They took Josh to CT in anticipation of the cranioplasty. They will send the scan to the company that will manufacture Josh's new skull. (Craig and OHSU use the same manufacturer.)
Josh came back from the scan asleep, but they woke him up to get him into bed. He was fidgity and anxious, so it was hard for him to go to sleep, but he finally fell asleep and slept for an hour and a half. He woke up for lunch, but ate only 4 bites of shredded roast beef, 1 bite of potatoes au gratin, and 2 oz. chocolate milk, then went back to sleep.
Josh had PT at 3:00. He worked on walking and on balance then we went back to his room and for the next two hours he wheeled back and forth in his wheelchair.
We ate dinner, then his primary doctor came to visit. He told me that he is taking Josh off Amantadine (an anti-Parkinson medication). He said that they gave it to Josh to make his brain "wake up." (Some places prescribe Ritalin.) But the doctor doesn't think Josh needs it anymore, so they are going to wean him off by this weekend. He said that being off Amantadine will definitely make Josh more tired (hard to imagine), but he hopes it will stop Josh's motor restlessness (the constant motion he is in, wheeling back and forth across the room).
Then the infectious disease doctor came by. She said that Josh has a staff infection that coincided with the PEG tube infection. She suspected it yesterday, so she started him on antibiotics then. The test results were confirmed today. It's a 6-day treatment series.
At 6:00 Josh's BA (Mathilda) took him for a walk around the premises. I didn't go; instead I worked on this blog. They got back at 6:30 so Mathilda could give the night BA (Maggie) the information she needed to take over. Mathilda said that Josh is the easiest patient she's had in a long time. She said she even called her friends to tell them about how great her day was, and when she left for the day she said she hopes she is our BA tomorrow. Wow! She's got a tough job.
The nurse fed him "dinner" through the PEG tube because he didn't eat enough calories today (video below), and he fell asleep at 8:30, literally two minutes after he laid his head down.
Bad news. Josh's lava lamp broke today. It's only a week old, and it gave up the ghost. Things are just not made as well now days as they were in the past.
Josh had another busy day today. (Tomorrow's schedule looks much less busy, so expect a short entry then.)
Josh got up and had breakfast (in his PJs). He still loves ketchup. Ketchup on his hash browns, on his eggs, and he even dipped his strawberries in it. I'm okay with it though. Ketchup is basically a low-calorie vegetable that's good in vitamins A and C, so I say, "You go, Josh!"
OT came at 8:00 to help Josh get dressed. He often gets his shoes on the wrong feet, but Josh can mostly dress himself now. Because it took him only 30 minutes to get dressed, the therapist worked with him for 30 on matching cards, building blocks, and drawing.
Then Josh had ST. The Speech Pathologist is trying to get him to remember new information - his teacher's names, what they do, how to get from one place to another. But he cannot do it; he physically CANNOT do it. He has PTA, so this is extremely frustrating for him. This is the "class" he hates most. But I consider today's class a success because it's the first time he didn't fall asleep in it (and it was fairly boring).
Neuropsychology was next on Josh's list. Dr. Schraa reviewed with us Josh's MRI scan from yesterday. I have been unwilling to look at them, but I did today. I understand why called his injury "devastating." I'm no doctor, but I could tell there was serious damage. The two sides of the brain aren't equal sizes, and they don't look the same.
The first place Schraa pointed to was the frontal lobe. He said that it is Josh's emotional center. It controls happy, sad, etc. Later, speaking of this particular image, he said, "Josh seems like a very likable young man." I agreed and added, "He's easygoing." Schraa said, "Most people with his injury would be angry and possibly even violent. You're lucky." I am thankful that Josh isn't those things, and I know I'm not lucky - I'm blessed. He told me that the damage in this area of the frontal lobe explains why Josh is unable to pay attention, why memory is so difficult, why he can't cry, and why he has to labor so hard to talk. "But he has important things on his side. The most important thing he has is you. Your support - being with him and helping him through this - will help him to recover more than any other variable in this equation. You are here. All our patients don't have that. It's obvious that you love him, and that will make a huge difference in his success. The second thing he has going for him is that he is still young. If this injury were to happen in someone who is 40, it would be much more severe. And the third thing he has going for him is time. We are still at the beginning; only one month in. He will still improve."
Then Schraa showed us a left-side injury. He said that was the place that people use to formulate, organize, and express their thoughts and ideas. This is why Josh uses head movement instead of words, and why he is unable to generate ideas of his own.
Then he showed us the "frontal and temporal injuries." These injuries decrease motivation. Schraa said that Josh finds no point in conversation, no impetus to go anywhere, will have a hard time tolerating frustrations (although Josh sat through this meeting, which had to be frustrating to him), and will be restless (why he is constantly moving in his wheelchair). But this injury will cause him anxiety, like he is always needing to be somewhere but can't figure out where.
He showed us that Josh's frontal lobe is still swollen from the original injury. He also showed us "recent" swelling in the ventricles. Josh is regressing in some ways - he used to be able to do things that he can't do now (draw a clock, use the restroom when needed, etc.). Schraa said that the swollen ventricles could contribute to this regression. I hope so.
Our meeting with Schraa was supposed to last 30 minutes, but ended early. He promised Josh he would change his approach since what he has been asking from Josh is far above his capability. Then we walked the halls for awhile and ended up in Josh's room. Schraa looked at the pictures on Josh's cork board. I took down a picture of Josh's grandparents and said, "Do you know who this is?" He has identified Grandma a number of times, but never Grandpa. He nodded his head yes. I asked, "Who is it?" He said, "Grandpa."
Schraa left and I got Josh into bed. Seconds later a transport team showed up with a gurney. They took Josh to CT in anticipation of the cranioplasty. They will send the scan to the company that will manufacture Josh's new skull. (Craig and OHSU use the same manufacturer.)
Josh came back from the scan asleep, but they woke him up to get him into bed. He was fidgity and anxious, so it was hard for him to go to sleep, but he finally fell asleep and slept for an hour and a half. He woke up for lunch, but ate only 4 bites of shredded roast beef, 1 bite of potatoes au gratin, and 2 oz. chocolate milk, then went back to sleep.
Josh had PT at 3:00. He worked on walking and on balance then we went back to his room and for the next two hours he wheeled back and forth in his wheelchair.
We ate dinner, then his primary doctor came to visit. He told me that he is taking Josh off Amantadine (an anti-Parkinson medication). He said that they gave it to Josh to make his brain "wake up." (Some places prescribe Ritalin.) But the doctor doesn't think Josh needs it anymore, so they are going to wean him off by this weekend. He said that being off Amantadine will definitely make Josh more tired (hard to imagine), but he hopes it will stop Josh's motor restlessness (the constant motion he is in, wheeling back and forth across the room).
Then the infectious disease doctor came by. She said that Josh has a staff infection that coincided with the PEG tube infection. She suspected it yesterday, so she started him on antibiotics then. The test results were confirmed today. It's a 6-day treatment series.
At 6:00 Josh's BA (Mathilda) took him for a walk around the premises. I didn't go; instead I worked on this blog. They got back at 6:30 so Mathilda could give the night BA (Maggie) the information she needed to take over. Mathilda said that Josh is the easiest patient she's had in a long time. She said she even called her friends to tell them about how great her day was, and when she left for the day she said she hopes she is our BA tomorrow. Wow! She's got a tough job.
The nurse fed him "dinner" through the PEG tube because he didn't eat enough calories today (video below), and he fell asleep at 8:30, literally two minutes after he laid his head down.
Thank you Mary for journaling and sharing. One step at a time. We love you and yours.
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