August 2, 2017 9:00 pm
Just a few notes before I get to today's summary:
The bad news today is that even with a rush on our bone flap order, it won't arrive for TWO FULL WEEKS FROM NOW! Synthies (the manufacturer) said that Josh's order is very complicated, and instead of 3-D printing it in 1 piece, they have to 3-D print 3 pieces and fit them together like a puzzle. This means that we are stuck in Neuro ICU for two more weeks. **sigh** As long as we are in this ICU, Josh won't be able to get out of bed because he is a high fall risk and cannot wear a helmet because it won't fit over the drain that was installed in the back of his head. His falling would be VERY BAD, so they won't do anything to risk that. So Josh's legs will become weak, and as the fluid drains from his brain, he is becoming much more coherent. We are afraid he will become bored and stir-crazy very quickly now. It's going to be a long two weeks for all of us. He will be able to walk around again after his bone flap is in place in two weeks.
But because he can't move around a lot, he will be receiving OT and PT every day in his bed.
The good news today is that Josh is MUCH better after the surgery late last night. He can do things today that he hasn't been able to do for days. There is a dramatic increase in functionality in less than 24 hours. We are both so grateful. He has smiled and laughed. He can color and do dot-to-dot. He speaks. And it's all because the decrease in swelling. And because of that, there is a huge change in his head shape. You can see where his skull is sagging in.
Here is a picture that captures both the catheter drain in the back of his head (explaining why a helmet won't work) and what the decrease in spinal fluid visually looks like. You can see that the scar line separates where the skull is from where there is no skull. As the fluid drains, his head sinks in where the skull is missing.
The above picture was taken at 8:00 tonight. The following is a picture from 8:00 this morning. You can see that Josh's head was still very swollen 12 hours earlier.
Josh also has a neuro shake. We sure hope it goes away one day.
Speaking of shakes, we have a tip for those who might want to someday order a banana milkshake at Steak N Shake. If you order a banana shake, they will give you ice cream mixed with banana-flavored pudding. If you want the real deal, you must order the "ultimate banana" shake, which costs $1 more.
Just a few notes before I get to today's summary:
- Our ice cream machine got fixed!
- We are enjoying cooler weather (83 degrees) than our friends in Portland, who are endured 105-degree heat today.
- Three days ago after the BA emptied Josh's catheter bag into a cup, she turned her back to reattach the bag. With her back turned, Josh grabbed the cup and put it to his lips. I heard her yell, "No!" so I turned to see what was going on. No one is sure how much, if any, he actually consumed. Yuck!
- Josh is technically in critical condition, but he is doing very well.
- Josh now weighs 128 pounds. They put him on a high-calorie tube feed tonight, and they will continue that every night just to fatten him up.
- Yesterday Mary told the doctor that Josh has an infection in his eye. The doctor told Mary that it is allergies. Mary told the doctor that is ridiculous. The doctor prescribed Claritin. It's pink eye. The antibiotics Josh is getting from last night's surgery is clearing the infection nicely.
- We reported a few days ago that Josh had a runny nose and that we were afraid he was getting sick. We were correct that his nose was runny, but incorrect about getting sick. It was cerebrospinal fluid that had built up so much in his brain that it was coming out of his nose. That's how much pressure he had in his head!
The bad news today is that even with a rush on our bone flap order, it won't arrive for TWO FULL WEEKS FROM NOW! Synthies (the manufacturer) said that Josh's order is very complicated, and instead of 3-D printing it in 1 piece, they have to 3-D print 3 pieces and fit them together like a puzzle. This means that we are stuck in Neuro ICU for two more weeks. **sigh** As long as we are in this ICU, Josh won't be able to get out of bed because he is a high fall risk and cannot wear a helmet because it won't fit over the drain that was installed in the back of his head. His falling would be VERY BAD, so they won't do anything to risk that. So Josh's legs will become weak, and as the fluid drains from his brain, he is becoming much more coherent. We are afraid he will become bored and stir-crazy very quickly now. It's going to be a long two weeks for all of us. He will be able to walk around again after his bone flap is in place in two weeks.
But because he can't move around a lot, he will be receiving OT and PT every day in his bed.
The good news today is that Josh is MUCH better after the surgery late last night. He can do things today that he hasn't been able to do for days. There is a dramatic increase in functionality in less than 24 hours. We are both so grateful. He has smiled and laughed. He can color and do dot-to-dot. He speaks. And it's all because the decrease in swelling. And because of that, there is a huge change in his head shape. You can see where his skull is sagging in.
Here is a picture that captures both the catheter drain in the back of his head (explaining why a helmet won't work) and what the decrease in spinal fluid visually looks like. You can see that the scar line separates where the skull is from where there is no skull. As the fluid drains, his head sinks in where the skull is missing.
The above picture was taken at 8:00 tonight. The following is a picture from 8:00 this morning. You can see that Josh's head was still very swollen 12 hours earlier.
Josh also has a neuro shake. We sure hope it goes away one day.
Speaking of shakes, we have a tip for those who might want to someday order a banana milkshake at Steak N Shake. If you order a banana shake, they will give you ice cream mixed with banana-flavored pudding. If you want the real deal, you must order the "ultimate banana" shake, which costs $1 more.
Wow! That is amazing how swollen his brain was. Thank heavens they did the surgery. Love you guys!
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