July 25, 2017 10:00 pm
Today was a big day for Josh. At 8:00 this morning he had an EEG. They were checking to see if he is still having seizures. He is on two anti-seizure medications, so he should not be having them. (This picture was taken after they shined a strobe light in his eyes to see if it would cause him to have a seizure.) I didn't get the results today.
At 9:30 Josh had Speech Therapy (ST). She would read a sentence off a card. One sentence was, "I am at Craig Hospital in Englewood, Colorado." Then she would ask questions like: "What hospital are you at?" and "What state are we in?" He didn't answer any of those correctly. But if she told him we are in Englewood then showed him three written choices and asked, "Which one says Englewood," he would choose the right one. But besides the multiple choice options where he was given the answer before he was asked which of the three words was correct, he didn't get a single question right.
At 10:00 he had Occupational Therapy (OT). First, he stretched with some arm bands. He didn't like that, but he didn't hate it either.
Then then therapist had him assemble the same metal box as last week. She said, "Each joint has three pieces." That instruction was incorrect. Here is what Josh ended up with. I think he was actually kind of discouraged about that and he wanted to keep working on it to make it right. But the OT told him that his time was up and she had another patient to see.
We returned to his room for lunch. He ate about half the salmon, all the yams, half the carrot/ginger soup, half the pears and watermelon, all of the chocolate milk and chocolate milkshake, and none of the carrot cake, then he spent the rest of the break sleeping. (I list the food just as a sample of what's on the menu. I know I've said it before, but the food at this hospital is really good.)
Physical Therapy (PT) was at 1:00. There was a new therapist with him today (Laura, who I think was in training), and she did a lot with basketballs and soccer balls, so Josh liked it. Instead of explaining, I'll include short (around one-minute) videos of what happened today.
Josh was supposed to see an Ears, Nose, and Throat (ENT) doctor at 2:00, but the doctor cancelled and rescheduled Josh for next week. He was going to determine what to do about Josh's badly broken nose, and they were going to check his vocal chords and decide whether he will need surgery to repair them. This was the part of the day I was most looking forward to, so I'm sad we have to wait another week to get plans in place.
Because the ENT cancelled, Josh saw the ST again. He tried the best he could, but he lasted only 10 minutes before he fell asleep in her office. I had to drag him back to his room. A nurse at the nurse's station took a video of me dragging Josh in his wheelchair. She sent it to me this afternoon. This is what it looks like. (I haven't seen any other parent dragging their sleeping child back to his room.)
An MRI was scheduled for 3:00. This is so the doctor can compare the ventricles in Josh's brain with previous MRIs to see if he needs a shunt inserted to drain the cerebrospinal fluid. I do not yet have the results.
Lastly, I met with a neurosurgeon today to talk about and make some decisions for Josh's upcoming cranioplasty. We decided Josh will have a synthetic skull instead of his original bone. They were supposed to take the 3D imaging for that today, but they didn't. Maybe tomorrow. The synthetic skull will be ready 2 weeks after imaging is done, so surgery will be scheduled for around August 10.
The rest of the night was typical. Josh had dinner, but not very much. They served meatloaf with a side of mac and cheese with gravy, so who could blame him? But I made it good in the end; I smuggled him some ice cream from my apartment complex. He was happy about that.
Then the BA (tonight's tech is Mimi - picture below) took Josh to the gym and had him work out, then the three of us walked the halls of the 3rd floor, East and West wings, until 9:00. Then we started getting him ready for bed. That's a 30-minute process, at least.
He was asleep shortly after his head hit the pillow. Another day done.
Today was a big day for Josh. At 8:00 this morning he had an EEG. They were checking to see if he is still having seizures. He is on two anti-seizure medications, so he should not be having them. (This picture was taken after they shined a strobe light in his eyes to see if it would cause him to have a seizure.) I didn't get the results today.
At 9:30 Josh had Speech Therapy (ST). She would read a sentence off a card. One sentence was, "I am at Craig Hospital in Englewood, Colorado." Then she would ask questions like: "What hospital are you at?" and "What state are we in?" He didn't answer any of those correctly. But if she told him we are in Englewood then showed him three written choices and asked, "Which one says Englewood," he would choose the right one. But besides the multiple choice options where he was given the answer before he was asked which of the three words was correct, he didn't get a single question right.
At 10:00 he had Occupational Therapy (OT). First, he stretched with some arm bands. He didn't like that, but he didn't hate it either.
Then then therapist had him assemble the same metal box as last week. She said, "Each joint has three pieces." That instruction was incorrect. Here is what Josh ended up with. I think he was actually kind of discouraged about that and he wanted to keep working on it to make it right. But the OT told him that his time was up and she had another patient to see.
We returned to his room for lunch. He ate about half the salmon, all the yams, half the carrot/ginger soup, half the pears and watermelon, all of the chocolate milk and chocolate milkshake, and none of the carrot cake, then he spent the rest of the break sleeping. (I list the food just as a sample of what's on the menu. I know I've said it before, but the food at this hospital is really good.)
Physical Therapy (PT) was at 1:00. There was a new therapist with him today (Laura, who I think was in training), and she did a lot with basketballs and soccer balls, so Josh liked it. Instead of explaining, I'll include short (around one-minute) videos of what happened today.
Josh was supposed to see an Ears, Nose, and Throat (ENT) doctor at 2:00, but the doctor cancelled and rescheduled Josh for next week. He was going to determine what to do about Josh's badly broken nose, and they were going to check his vocal chords and decide whether he will need surgery to repair them. This was the part of the day I was most looking forward to, so I'm sad we have to wait another week to get plans in place.
Because the ENT cancelled, Josh saw the ST again. He tried the best he could, but he lasted only 10 minutes before he fell asleep in her office. I had to drag him back to his room. A nurse at the nurse's station took a video of me dragging Josh in his wheelchair. She sent it to me this afternoon. This is what it looks like. (I haven't seen any other parent dragging their sleeping child back to his room.)
An MRI was scheduled for 3:00. This is so the doctor can compare the ventricles in Josh's brain with previous MRIs to see if he needs a shunt inserted to drain the cerebrospinal fluid. I do not yet have the results.
Lastly, I met with a neurosurgeon today to talk about and make some decisions for Josh's upcoming cranioplasty. We decided Josh will have a synthetic skull instead of his original bone. They were supposed to take the 3D imaging for that today, but they didn't. Maybe tomorrow. The synthetic skull will be ready 2 weeks after imaging is done, so surgery will be scheduled for around August 10.
The rest of the night was typical. Josh had dinner, but not very much. They served meatloaf with a side of mac and cheese with gravy, so who could blame him? But I made it good in the end; I smuggled him some ice cream from my apartment complex. He was happy about that.
Then the BA (tonight's tech is Mimi - picture below) took Josh to the gym and had him work out, then the three of us walked the halls of the 3rd floor, East and West wings, until 9:00. Then we started getting him ready for bed. That's a 30-minute process, at least.
He was asleep shortly after his head hit the pillow. Another day done.
Whew - What a day! Way to go, Josh! Way to go, Mom!
ReplyDeleteBig big day! I am glad you are sending the updates. It helps me know how to pray...
ReplyDeleteMy Dear ones, My heart breaks for you and rejoices for you all at the same time. You will remember these as good days. I can hardly wait for the test results to come back. The scans are always scary, but Joshua always exceeds the limits of their possibilities. Of course we pray that the scans show improvement so that we can be assured that his body is healing as well as his spirit. You are noble people. I hope Paul will be back soon and his business trip was successful. I love you so much.
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