September 5, 2017 9:30 pm
Mary was sick all night again and awake at 3:00 this morning. She has NO voice at all today. Even whispering hurts.
Josh had an MRI at 7:00 this morning but we think it was a mistake. Josh just had a CT scan last Saturday, which was in lieu of today's MRI. But his doctor was out over the weekend so we think no one cancelled the MRI, as it was scheduled for before the doctor arrived. In any case, the results are the same as last Saturday's CT scan, so no change will be made to Josh's treatment at this time. Maybe in a week or two they will dial down the shunt and see what happens.
Josh is doing better in some ways. This morning he mostly fed himself breakfast. His responses were fairly quick. But he has little bladder control, he has the neuro shake, and he gets cold a lot. So while some things seem to improve, other things seem to get worse. And, BTW, we wonder if the synthetic skull insert isn't slightly off; Josh's skull above his temples seems to be a little narrow. We have been wondering how they could accurately shape it without having the original skull to copy.
Josh's first class today was OT. She had him stand in front of a mirror and told him to point to different body parts. "Point to your nose." He got that one. "Point to your eyes." He got that one. He also got cheek, chin, mouth, shoulders, and back. But he missed arm, leg, ears, elbow, knee, foot, hand, wrist, hair, eyebrows.
Lastly, the therapist put a bunch of laminated pictures on the table and asked Josh to put them in order. The first set of pictures was a guy making a peanut butter sandwich. First he opens the cupboard. Then he removes the peanut butter (which Josh called calmoxinor). Etc. Josh couldn't put the pictures in order without help.
The second set of pictures was of a guy doing laundry. That was a disaster! Josh didn't even come close. And that's how OT ended.
Dr. Buzan, the psychiatrist, came to see Josh at 10:30. His job is to make sure Josh is on the right medications. It was a 14-minute visit that ended with, "No need to change anything."
Then Josh went to ST. Sometimes when Mary says we are going somewhere, Josh just takes off in his wheelchair, not knowing where to go. And that's what happened. So Mary hurried around the floor trying to find Josh. That's always embarrassing for her. It's also one of the reasons they won't let Josh out of the wheelchair - he could escape the floor without detection.
In Speech the pathologist went over the body parts. Josh did very well this time! I guess the review in OT helped significantly. She was impressed. Josh got 12/14 right. That was Josh's last morning class.
The woman who cleaned our room Saturday mixed toilet bowl cleaner (instead of water) with floor cleaner, and she mopped our floor with it. She gave the floor a THOROUGH cleaning. But the chemical combination was toxic. Besides having a horrible smell, it burned our lungs and made the BA in the room (because she has asthma) have breathing problems. The housekeeper mopped the floor with water five times to get the chemicals off and hopefully remove the stench, but the chemical combination permanently stained the floor. (The bad news is that while it could be smelled 100 feet away, Josh couldn't smell it sitting in the room. The injury seriously damaged his olfactory bulb, affecting his ability to smell. Until now he has always had a keen sense of smell, maybe even superior to Mary's ... but probably not.) That afternoon they sanded and waxed the floor, but they couldn't get all the stain out.
As the housekeeper mopped on Saturday, she splashed chemical everywhere: on the floor, on the cupboards, on the moulding, and halfway up the doors. So today, while we were eating lunch in Josh's room, someone came to try to clean the stain off the moulding, the cupboards, and the doors. Rewetting the chemicals made the room toxic again and gave Mary a headache. People in the hall could smell it, but Josh couldn't.
Speaking of lunch, we discovered that Josh still dislikes pineapple.
Josh had another ST appointment after lunch. We like his Speech Pathologist. She looks for ways to make learning fun. Today she taped pictures to cups and gave Josh a crossbow. She would either tell him which picture to shoot, or she would give him a clue and he would have to figure out which picture to shoot. For the most part, he didn't know which body part he was supposed to aim at. But he did shoot three he was aiming for (all on his right/blind side)!
The psychologist didn't show for our appointment with him. What does that say?
Josh had PT at 2:00. We were trained on how to seat Josh in a car and how to take apart and reassemble the wheelchair so we can take it with us in the car. If we mind our Ps and Qs we should get a car pass by the end of this week, then we'll be free to take Josh nearly anywhere we want as long as we return by the med times.
After dinner Mary and Josh played air hockey for about 45 minutes. He sure likes it!
Josh's nightly rituals are pretty easy, considering the shots and pain he has to endure every day. His nurse had to put cream around his feeding tube so it doesn't rub his skin and cause burn (as it has a number of times). As she began, Josh said, "That's gonna hurt!" He put his hands in the way to prevent her from doing her job. She asked, "Do you want to do it?" He looked at her incredulously and replied, "No! It's gonna hurt!"
My two best friends sent me an early birthday present. Thank you Janet and Val for the Edible Arrangements and balloons!!! Gifts like that make everyone smile. 😊
Mary was sick all night again and awake at 3:00 this morning. She has NO voice at all today. Even whispering hurts.
Josh had an MRI at 7:00 this morning but we think it was a mistake. Josh just had a CT scan last Saturday, which was in lieu of today's MRI. But his doctor was out over the weekend so we think no one cancelled the MRI, as it was scheduled for before the doctor arrived. In any case, the results are the same as last Saturday's CT scan, so no change will be made to Josh's treatment at this time. Maybe in a week or two they will dial down the shunt and see what happens.
Josh is doing better in some ways. This morning he mostly fed himself breakfast. His responses were fairly quick. But he has little bladder control, he has the neuro shake, and he gets cold a lot. So while some things seem to improve, other things seem to get worse. And, BTW, we wonder if the synthetic skull insert isn't slightly off; Josh's skull above his temples seems to be a little narrow. We have been wondering how they could accurately shape it without having the original skull to copy.
Josh's first class today was OT. She had him stand in front of a mirror and told him to point to different body parts. "Point to your nose." He got that one. "Point to your eyes." He got that one. He also got cheek, chin, mouth, shoulders, and back. But he missed arm, leg, ears, elbow, knee, foot, hand, wrist, hair, eyebrows.
Then the therapist handed him a marker and they played tic-tac-toe on the mirror. Josh won the first game! The rest of the games were "cat's games," and Josh knew the term for that.
Lastly, the therapist put a bunch of laminated pictures on the table and asked Josh to put them in order. The first set of pictures was a guy making a peanut butter sandwich. First he opens the cupboard. Then he removes the peanut butter (which Josh called calmoxinor). Etc. Josh couldn't put the pictures in order without help.
The second set of pictures was of a guy doing laundry. That was a disaster! Josh didn't even come close. And that's how OT ended.
Dr. Buzan, the psychiatrist, came to see Josh at 10:30. His job is to make sure Josh is on the right medications. It was a 14-minute visit that ended with, "No need to change anything."
Then Josh went to ST. Sometimes when Mary says we are going somewhere, Josh just takes off in his wheelchair, not knowing where to go. And that's what happened. So Mary hurried around the floor trying to find Josh. That's always embarrassing for her. It's also one of the reasons they won't let Josh out of the wheelchair - he could escape the floor without detection.
In Speech the pathologist went over the body parts. Josh did very well this time! I guess the review in OT helped significantly. She was impressed. Josh got 12/14 right. That was Josh's last morning class.
The woman who cleaned our room Saturday mixed toilet bowl cleaner (instead of water) with floor cleaner, and she mopped our floor with it. She gave the floor a THOROUGH cleaning. But the chemical combination was toxic. Besides having a horrible smell, it burned our lungs and made the BA in the room (because she has asthma) have breathing problems. The housekeeper mopped the floor with water five times to get the chemicals off and hopefully remove the stench, but the chemical combination permanently stained the floor. (The bad news is that while it could be smelled 100 feet away, Josh couldn't smell it sitting in the room. The injury seriously damaged his olfactory bulb, affecting his ability to smell. Until now he has always had a keen sense of smell, maybe even superior to Mary's ... but probably not.) That afternoon they sanded and waxed the floor, but they couldn't get all the stain out.
As the housekeeper mopped on Saturday, she splashed chemical everywhere: on the floor, on the cupboards, on the moulding, and halfway up the doors. So today, while we were eating lunch in Josh's room, someone came to try to clean the stain off the moulding, the cupboards, and the doors. Rewetting the chemicals made the room toxic again and gave Mary a headache. People in the hall could smell it, but Josh couldn't.
Speaking of lunch, we discovered that Josh still dislikes pineapple.
Josh had another ST appointment after lunch. We like his Speech Pathologist. She looks for ways to make learning fun. Today she taped pictures to cups and gave Josh a crossbow. She would either tell him which picture to shoot, or she would give him a clue and he would have to figure out which picture to shoot. For the most part, he didn't know which body part he was supposed to aim at. But he did shoot three he was aiming for (all on his right/blind side)!
The psychologist didn't show for our appointment with him. What does that say?
Josh had PT at 2:00. We were trained on how to seat Josh in a car and how to take apart and reassemble the wheelchair so we can take it with us in the car. If we mind our Ps and Qs we should get a car pass by the end of this week, then we'll be free to take Josh nearly anywhere we want as long as we return by the med times.
After dinner Mary and Josh played air hockey for about 45 minutes. He sure likes it!
Josh's nightly rituals are pretty easy, considering the shots and pain he has to endure every day. His nurse had to put cream around his feeding tube so it doesn't rub his skin and cause burn (as it has a number of times). As she began, Josh said, "That's gonna hurt!" He put his hands in the way to prevent her from doing her job. She asked, "Do you want to do it?" He looked at her incredulously and replied, "No! It's gonna hurt!"
My two best friends sent me an early birthday present. Thank you Janet and Val for the Edible Arrangements and balloons!!! Gifts like that make everyone smile. 😊
Being so sick at a time like this just plain isn't fair! Hope that ice-cream thing is up and going. Have Paul buy you some popsicles and fudgsicles. (What, I didn't spell these right? It's Big Al, Baby.)
ReplyDelete