July 27, 2017 10:30 pm
Dr. Makley was gone today, so we had two fill-in physicians today: Jeremy (the PA) and Dr. Spier. Jeremy was great. He sat in Josh's room with me for an hour and went over Josh's file. He said that Josh has a serious - but not severe - case of hydrocephalus. Josh has no bone flap, so it is not dangerous for him because as his brain swells, there is no bone for it to bump against. However, the hydrocephalus causes Josh to be tired and confused; it is the reason Josh has lost his ability to be continent; it contributes to the problems he has with learning, motivation, and memory; and it might also be causing visual problems. He said that when the fluid is drained, Josh will be more awake and aware. He then warned me about the effects of Josh being aware of his condition: sense of loss, anger, sadness, depression, and guilt.
Jeremy also reviewed Josh's medications with me. He is taking two anti-seizure medications, some amount of Amantadine (to "wake up" the brain), and blood pressure medication. ALL of these have the side effect of fatigue. No wonder he's tired all the time! As I said yesterday, they are weaning him off the Amantadine, and after the hydrocephalus surgery, he will no longer take the blood pressure medication. But the anti-seizure medications will need to be taken long term. He is also taking an antibiotic for the staff infection.
Like I said yesterday, Josh had a short day today. He had only the basic three classes. (They will make up for his easy day today by working him hard tomorrow.)
Here are some videos showing what Josh did in OT. I think the activities they do are sometimes pretty interesting.
Then Therese wanted to work with Josh on counting money, but when she would write "15 cents" (for example) on a piece of paper, he couldn't see it. So she lent him her glasses. I am sure they are the wrong prescription, but Josh could see much better. Unfortunately, it didn't help with his ability to count.
The Speech Pathologist tried to get Joshua to copy words from a piece of paper to a whiteboard. He did pretty well at first, but he didn't do as well as he went on.
Josh spent his time in PT walking the halls and working on balance.
Paul came home today (YAY!), so Paul and Josh spent a lot of time playing catch in the room. They had a long conversation. Paul said that Josh remembered he is in a hospital and he hurt his head, he remembered his job, he remembered Paul's and my names, but he did not remember Eden.
Dr. Makley was gone today, so we had two fill-in physicians today: Jeremy (the PA) and Dr. Spier. Jeremy was great. He sat in Josh's room with me for an hour and went over Josh's file. He said that Josh has a serious - but not severe - case of hydrocephalus. Josh has no bone flap, so it is not dangerous for him because as his brain swells, there is no bone for it to bump against. However, the hydrocephalus causes Josh to be tired and confused; it is the reason Josh has lost his ability to be continent; it contributes to the problems he has with learning, motivation, and memory; and it might also be causing visual problems. He said that when the fluid is drained, Josh will be more awake and aware. He then warned me about the effects of Josh being aware of his condition: sense of loss, anger, sadness, depression, and guilt.
Jeremy also reviewed Josh's medications with me. He is taking two anti-seizure medications, some amount of Amantadine (to "wake up" the brain), and blood pressure medication. ALL of these have the side effect of fatigue. No wonder he's tired all the time! As I said yesterday, they are weaning him off the Amantadine, and after the hydrocephalus surgery, he will no longer take the blood pressure medication. But the anti-seizure medications will need to be taken long term. He is also taking an antibiotic for the staff infection.
Like I said yesterday, Josh had a short day today. He had only the basic three classes. (They will make up for his easy day today by working him hard tomorrow.)
Here are some videos showing what Josh did in OT. I think the activities they do are sometimes pretty interesting.
Then Therese wanted to work with Josh on counting money, but when she would write "15 cents" (for example) on a piece of paper, he couldn't see it. So she lent him her glasses. I am sure they are the wrong prescription, but Josh could see much better. Unfortunately, it didn't help with his ability to count.
The Speech Pathologist tried to get Joshua to copy words from a piece of paper to a whiteboard. He did pretty well at first, but he didn't do as well as he went on.
Josh spent his time in PT walking the halls and working on balance.
Paul came home today (YAY!), so Paul and Josh spent a lot of time playing catch in the room. They had a long conversation. Paul said that Josh remembered he is in a hospital and he hurt his head, he remembered his job, he remembered Paul's and my names, but he did not remember Eden.
My goodness, It sounds like a very very big day but not a bad one. I seems when you see the whole picture that some progress is indeed being made...I continue to pray for all of you... kš¦
ReplyDeleteYou and Paul are fine writers. Your blogs are fascinating. One day you will co-write a book and your documenting now will provide your breath-taking experiences. One of the best books I ever read was Into Thin Air....about a mountain climbing experience for a group of folks. Your writing skills touch on the emotions of many....not just Joshua.
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