July 21, 2017 9:15 pm
When I got to Josh's room this morning, I noticed they removed his IV overnight. So that's great! And Josh slept 7 hours last night! Then he got up, got dressed, ate breakfast, and went back to bed at 9:00, where he slept until his 10:00 OT appointment. It was difficult to wake him up. We almost gave up and let him sleep through his appointment.
In OT today, Josh was given a demo box and parts so he could put together a duplicate metal box. He built two sides well (except the screws pointed out instead of in), then the other two sides he mixed up the long and the short ends. But he enjoyed doing it and the OT was pleased with his focused concentration on the project.
The doctors were afraid that Josh is silently aspirating his food, meaning that he is aspirating but his lungs aren't strong enough to cough up the food, so at noon he had a modified barium swallow. They took a real-time x-ray while he drank and ate different things (thick liquids, medium liquids, thin liquids, a fruit cup, and a graham cracker).
Here are 2 cool videos to show what we saw as Josh was swallowing. They haven't given me the real version yet. The first video I took while behind the lead glass. I had to use the zoom function on my iPhone, so it's kinda grainy. For the second video, I captured the monitor while it was replaying the video to copy it to a disk, so it is essentially in slow motion. (The dot and the buckle are from his helmet.)
The results of the test (as you can plainly see in these videos) is that his swallowing is great and he can eat more solid foods than he could before.
At 1:00 Josh had PT. His therapist walked with him for 30 minutes to test his walking and his balance. He walks well, but he is still considered a high fall risk because he is occasionally off balance. So he is still locked into his wheelchair. He is not happy about that.
That was it for the scheduled activities today. Josh napped from 2:00 to nearly 4:00 then we spent the rest of the evening trying to find ways to entertain him. It wasn't easy.
During the evening, Dr. Makley came by to talk with us. More bad news.
(1) Before we came to Craig Hospital, we asked what would happen with Josh's cranioplasty that was scheduled at OHSU for the first week of August. We were told by the Case Manager that Craig would send for Josh's bone flap, OHSU would air it to them, and they would do the cranioplasty here. Dr. Makley told us that Swedish Medical Center (who would technically do the operation) says they won't do that because they can't ensure the original bone doesn't contain infection. They sent for a bone flap one time, and that bone flap was infected. So now it's policy not to do that. They are willing to make a plastic bone flap for him. Obviously, Paul and I were both unhappy about this. Dr. Makley is setting an appointment for us to meet with the neurosurgeons next week to discuss this issue.
(2) This one is worse than problem #1. Josh MAY have hydrocephalus, a.k.a. "water on the brain." This means that the clear protective liquid in his brain is collecting within the ventricles, causing them to enlarge. This causes pressure on his brain, and it causes his brain to swell. This could result in more brain damage, leading to developmental, physical, and intellectual impairments.
Since Josh would normally have most of the symptoms of hydrocephalus due to his brain injury, an MRI will be taken on the 25th and compared with the MRI taken on the 19th. If what they suspect is confirmed, a permanent shunt will be inserted - one end into the brain and the other into the chest or abdominal cavity. Excess fluid then drains through the tube from the brain into the abdomen, where it can be more easily absorbed.
You can bet we will be praying that the fluid drains on its own so that Josh doesn't have to have another surgery.
When I got to Josh's room this morning, I noticed they removed his IV overnight. So that's great! And Josh slept 7 hours last night! Then he got up, got dressed, ate breakfast, and went back to bed at 9:00, where he slept until his 10:00 OT appointment. It was difficult to wake him up. We almost gave up and let him sleep through his appointment.
In OT today, Josh was given a demo box and parts so he could put together a duplicate metal box. He built two sides well (except the screws pointed out instead of in), then the other two sides he mixed up the long and the short ends. But he enjoyed doing it and the OT was pleased with his focused concentration on the project.
The doctors were afraid that Josh is silently aspirating his food, meaning that he is aspirating but his lungs aren't strong enough to cough up the food, so at noon he had a modified barium swallow. They took a real-time x-ray while he drank and ate different things (thick liquids, medium liquids, thin liquids, a fruit cup, and a graham cracker).
Here are 2 cool videos to show what we saw as Josh was swallowing. They haven't given me the real version yet. The first video I took while behind the lead glass. I had to use the zoom function on my iPhone, so it's kinda grainy. For the second video, I captured the monitor while it was replaying the video to copy it to a disk, so it is essentially in slow motion. (The dot and the buckle are from his helmet.)
The results of the test (as you can plainly see in these videos) is that his swallowing is great and he can eat more solid foods than he could before.
At 1:00 Josh had PT. His therapist walked with him for 30 minutes to test his walking and his balance. He walks well, but he is still considered a high fall risk because he is occasionally off balance. So he is still locked into his wheelchair. He is not happy about that.
That was it for the scheduled activities today. Josh napped from 2:00 to nearly 4:00 then we spent the rest of the evening trying to find ways to entertain him. It wasn't easy.
During the evening, Dr. Makley came by to talk with us. More bad news.
(1) Before we came to Craig Hospital, we asked what would happen with Josh's cranioplasty that was scheduled at OHSU for the first week of August. We were told by the Case Manager that Craig would send for Josh's bone flap, OHSU would air it to them, and they would do the cranioplasty here. Dr. Makley told us that Swedish Medical Center (who would technically do the operation) says they won't do that because they can't ensure the original bone doesn't contain infection. They sent for a bone flap one time, and that bone flap was infected. So now it's policy not to do that. They are willing to make a plastic bone flap for him. Obviously, Paul and I were both unhappy about this. Dr. Makley is setting an appointment for us to meet with the neurosurgeons next week to discuss this issue.
(2) This one is worse than problem #1. Josh MAY have hydrocephalus, a.k.a. "water on the brain." This means that the clear protective liquid in his brain is collecting within the ventricles, causing them to enlarge. This causes pressure on his brain, and it causes his brain to swell. This could result in more brain damage, leading to developmental, physical, and intellectual impairments.
Since Josh would normally have most of the symptoms of hydrocephalus due to his brain injury, an MRI will be taken on the 25th and compared with the MRI taken on the 19th. If what they suspect is confirmed, a permanent shunt will be inserted - one end into the brain and the other into the chest or abdominal cavity. Excess fluid then drains through the tube from the brain into the abdomen, where it can be more easily absorbed.
You can bet we will be praying that the fluid drains on its own so that Josh doesn't have to have another surgery.
Keeping Josh and all of you in my prayers! Thanks for the updates, Mary; I read them every day and they remind me to keep praying. I love you all!
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