September 27, 2017 9:10 pm
Rough day ... but I'm tired of saying it's a rough day. I want to say, "GREAT DAY! Josh is rockin' it! He can feed himself, he can go to the bathroom by himself, he can walk without help!" Maybe someday, but that day is not today.
Josh was wide awake when I got to the hospital this morning. I asked if he'd been awake for a long time. He said yes, but he probably doesn't even know what 'a long time' is, or means. The BA and I got him out of bed. We got him dressed and ready for the day. We got him breakfast, but he wasn't eating. I kept encouraging him to eat, but he wouldn't. After at least 45 minutes, I sat at the table with him. He was holding two cubed potatoes on a fork, and they were soggy from the ketchup that had been on them. He'd been holding those potatoes for a long time. I said, "Can you put that in your mouth?" He said, "I don't think so." Then I realized that it wasn't that he was distracted or didn't want to eat, he COULDN'T eat. I said, "Let's get you a bite of pancake," and I started feeding him. He ate voraciously! Poor guy. He was so hungry. And we had only 15 minutes until class (which, for him, is hardly any time at all.) So after 4 or 5 pancake bites, we were off to class.
I took him to OT in the gym then left to talk to the doctor about Josh's changed behavior. We need to make sure it wasn't caused by the shunt change. Makley isn't here today, so I spoke with his PA ... Jeremy. I explained what was happening and asked if it was because of the shunt adjustment yesterday. Jeremy didn't seem too concerned about what I was saying until the physical therapist walked in. You've got to know the physical therapist. She is the most conservative woman on the staff, and she comes across as strong and confident. She wasn't confident at this point. "He isn't doing well..." She didn't specify who "he" was, and I was hoping she wasn't referring to Josh, but she was. "He fell asleep and I can't wake him up. I don't know what you want me to do. Should I push the button?" At the time I didn't know what 'push the button' means, but it didn't sound like it was a good thing. (It's a button that should be pushed when it's believed he is having a seizure.) The three of us discussed the situation and decided that the best thing to do was to put him to bed and let him sleep until lunch (90 minutes). So I dragged him back to his room and the PT and I put him to bed.
He woke up around 11:55. Perfect timing! He was very groggy as we went to get lunch and I wasn't sure he was doing all that well. I've been concerned about how long it is taking Josh to get through a meal - it takes HOURS - so the speech pathologist met us for lunch. She commented that Josh seems "flat" and "detached." Those were my thoughts exactly. She watched him eat lunch, tried a few tricks, and left stymied on why Josh is takes so long to eat.
But the rest of the day went better. He seemed to "wake up." It was nice to have him back.
Because he slept through his classes, PT came back at 1:30. She walked the halls with Josh to "warm up," she had him walk a line (heel to toe), and she had him do lunges.
After PT, Josh had ST. He spent those 30 minutes trying to remember the names of a variety of nouns. It is SO hard for him.
After ST, Josh had eye clinic. The doctor was running late, but it was worth the wait. Dr. Politzer is a little strange, so it can be uncomfortable at times. He asked Josh, "Has anything changed since you were last here." Seriously? Anyway, Josh said, "No." I wasn't sure what to do, so I asked, "Should I say anything?" He said, "Go ahead," so I told him that since we left Josh has had double vision, and the peripheral vision has increased. He took notes then asked Josh to cover his left eye and read the chart on the wall. Josh couldn't see anything. Then the doctor put his hand against his black shirt, stood 5 feet in front of Josh, and asked, "How many fingers am I holding up?" Josh said, "Two," and he was right. The doctor stepped back 5 more feet and said, "How may fingers now?" Josh said, "One," and was right. The doctor sat down and wrote more notes. When he finished writing, he looked up at me and asked, "Do you know how incredible this is?" I said, "I know!" He said, "When he came last on September 6, he could see my fingers at between 1 and 2 feet, now he can see them at 10! THIS is incredible!" I said, "We are going home in 9 days, so what should I do when I get home?" He looked at me with real concern. He told me to remember that vision isn't the most important thing for Josh at this point, but within a couple of months we need to see a neuroopthamologist. He told me that he is not impressed with graduates from Pacific University in Forest Grove - his alma mater. "They won't be able to meet Josh's needs; they likely won't even understand his needs." He suggested I find a doctor at OHSU. "And if you don't feel like Josh is getting what he needs, here is my phone number. Call me and I will find a good doctor for you."
So that was good! We went back to Josh's room and "we" put together puzzles. At first I handed him 4 4-piece puzzles. He put them together, no problem. He couldn't do that six weeks ago! So I upped the ante. I pulled out a 100-piece Scooby Doo puzzle. I didn't put any pieces in, but I did suggest things like, "It looks like right here needs a piece that has a part that sticks out that has green on it." And I took apart pieces he forced together that didn't actually go together. He put the first 3/4 of the puzzle together, then the new BA felt compelled to work on the puzzle for him. She placed maybe 10 pieces then backed off and he finished it.
Next I pulled out a 24-piece puzzle set, and Josh did it all completely on his own. No help at all.
Lastly, I pulled out a 100-piece puzzle set of a cat and a dog sitting on the ground together, but the pieces were smaller than the Scooby Doo puzzle. He assembled the frame, but he needed some help. ALL the pieces are green - some clear (like the grass) and some blurry (like the background). It was much more difficult. He finished the frame at 5:30, so we took a break for dinner. He went to the Bistro and chose fettuccine with pork and beef bolognese, deep-fried chicken, real mashed potatoes with chicken gravy, a bowl of grapes, a chocolate chip cookie, and two Ensures. At 8:00 he was still eating and I was telling him he needed to stop. He said he was still hungry, and since he was eating so slowly, I let it go. At 8:03, it all came up. (Tonight I am grateful for my cat-like reflexes. That could have been really messy!) This happens when the pressure in his brain isn't right.
So I got him cleaned up and the BA came in to help him get ready for bed. I asked her to take him to the bathroom first, which she did. I talked with some neighbors and did a few other things. When I came back into the room 28 minutes later, Josh was still in the bathroom! I opened the door and asked, "Josh, are you okay?" The BA was standing beside him; he didn't answer. I noticed immediately and said, "He's asleep." Come on. That's kind of funny. He fell asleep on the toilet and the person hired to take care of him didn't even notice! She kept saying, "Come on, Josh! Wake up!" Yeah, that's not gonna do it. So I got him off the toilet and into bed before saying goodnight tonight.
Rough day ... but I'm tired of saying it's a rough day. I want to say, "GREAT DAY! Josh is rockin' it! He can feed himself, he can go to the bathroom by himself, he can walk without help!" Maybe someday, but that day is not today.
Josh was wide awake when I got to the hospital this morning. I asked if he'd been awake for a long time. He said yes, but he probably doesn't even know what 'a long time' is, or means. The BA and I got him out of bed. We got him dressed and ready for the day. We got him breakfast, but he wasn't eating. I kept encouraging him to eat, but he wouldn't. After at least 45 minutes, I sat at the table with him. He was holding two cubed potatoes on a fork, and they were soggy from the ketchup that had been on them. He'd been holding those potatoes for a long time. I said, "Can you put that in your mouth?" He said, "I don't think so." Then I realized that it wasn't that he was distracted or didn't want to eat, he COULDN'T eat. I said, "Let's get you a bite of pancake," and I started feeding him. He ate voraciously! Poor guy. He was so hungry. And we had only 15 minutes until class (which, for him, is hardly any time at all.) So after 4 or 5 pancake bites, we were off to class.
I took him to OT in the gym then left to talk to the doctor about Josh's changed behavior. We need to make sure it wasn't caused by the shunt change. Makley isn't here today, so I spoke with his PA ... Jeremy. I explained what was happening and asked if it was because of the shunt adjustment yesterday. Jeremy didn't seem too concerned about what I was saying until the physical therapist walked in. You've got to know the physical therapist. She is the most conservative woman on the staff, and she comes across as strong and confident. She wasn't confident at this point. "He isn't doing well..." She didn't specify who "he" was, and I was hoping she wasn't referring to Josh, but she was. "He fell asleep and I can't wake him up. I don't know what you want me to do. Should I push the button?" At the time I didn't know what 'push the button' means, but it didn't sound like it was a good thing. (It's a button that should be pushed when it's believed he is having a seizure.) The three of us discussed the situation and decided that the best thing to do was to put him to bed and let him sleep until lunch (90 minutes). So I dragged him back to his room and the PT and I put him to bed.
He woke up around 11:55. Perfect timing! He was very groggy as we went to get lunch and I wasn't sure he was doing all that well. I've been concerned about how long it is taking Josh to get through a meal - it takes HOURS - so the speech pathologist met us for lunch. She commented that Josh seems "flat" and "detached." Those were my thoughts exactly. She watched him eat lunch, tried a few tricks, and left stymied on why Josh is takes so long to eat.
But the rest of the day went better. He seemed to "wake up." It was nice to have him back.
Because he slept through his classes, PT came back at 1:30. She walked the halls with Josh to "warm up," she had him walk a line (heel to toe), and she had him do lunges.
After PT, Josh had ST. He spent those 30 minutes trying to remember the names of a variety of nouns. It is SO hard for him.
After ST, Josh had eye clinic. The doctor was running late, but it was worth the wait. Dr. Politzer is a little strange, so it can be uncomfortable at times. He asked Josh, "Has anything changed since you were last here." Seriously? Anyway, Josh said, "No." I wasn't sure what to do, so I asked, "Should I say anything?" He said, "Go ahead," so I told him that since we left Josh has had double vision, and the peripheral vision has increased. He took notes then asked Josh to cover his left eye and read the chart on the wall. Josh couldn't see anything. Then the doctor put his hand against his black shirt, stood 5 feet in front of Josh, and asked, "How many fingers am I holding up?" Josh said, "Two," and he was right. The doctor stepped back 5 more feet and said, "How may fingers now?" Josh said, "One," and was right. The doctor sat down and wrote more notes. When he finished writing, he looked up at me and asked, "Do you know how incredible this is?" I said, "I know!" He said, "When he came last on September 6, he could see my fingers at between 1 and 2 feet, now he can see them at 10! THIS is incredible!" I said, "We are going home in 9 days, so what should I do when I get home?" He looked at me with real concern. He told me to remember that vision isn't the most important thing for Josh at this point, but within a couple of months we need to see a neuroopthamologist. He told me that he is not impressed with graduates from Pacific University in Forest Grove - his alma mater. "They won't be able to meet Josh's needs; they likely won't even understand his needs." He suggested I find a doctor at OHSU. "And if you don't feel like Josh is getting what he needs, here is my phone number. Call me and I will find a good doctor for you."
So that was good! We went back to Josh's room and "we" put together puzzles. At first I handed him 4 4-piece puzzles. He put them together, no problem. He couldn't do that six weeks ago! So I upped the ante. I pulled out a 100-piece Scooby Doo puzzle. I didn't put any pieces in, but I did suggest things like, "It looks like right here needs a piece that has a part that sticks out that has green on it." And I took apart pieces he forced together that didn't actually go together. He put the first 3/4 of the puzzle together, then the new BA felt compelled to work on the puzzle for him. She placed maybe 10 pieces then backed off and he finished it.
Next I pulled out a 24-piece puzzle set, and Josh did it all completely on his own. No help at all.
Lastly, I pulled out a 100-piece puzzle set of a cat and a dog sitting on the ground together, but the pieces were smaller than the Scooby Doo puzzle. He assembled the frame, but he needed some help. ALL the pieces are green - some clear (like the grass) and some blurry (like the background). It was much more difficult. He finished the frame at 5:30, so we took a break for dinner. He went to the Bistro and chose fettuccine with pork and beef bolognese, deep-fried chicken, real mashed potatoes with chicken gravy, a bowl of grapes, a chocolate chip cookie, and two Ensures. At 8:00 he was still eating and I was telling him he needed to stop. He said he was still hungry, and since he was eating so slowly, I let it go. At 8:03, it all came up. (Tonight I am grateful for my cat-like reflexes. That could have been really messy!) This happens when the pressure in his brain isn't right.
So I got him cleaned up and the BA came in to help him get ready for bed. I asked her to take him to the bathroom first, which she did. I talked with some neighbors and did a few other things. When I came back into the room 28 minutes later, Josh was still in the bathroom! I opened the door and asked, "Josh, are you okay?" The BA was standing beside him; he didn't answer. I noticed immediately and said, "He's asleep." Come on. That's kind of funny. He fell asleep on the toilet and the person hired to take care of him didn't even notice! She kept saying, "Come on, Josh! Wake up!" Yeah, that's not gonna do it. So I got him off the toilet and into bed before saying goodnight tonight.
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