August 4, 2019 9:50 pm
Pretty boring day for Josh today. There is not a whole lot for him to do while at Swedish Hospital, but he keeps a pretty good attitude about things. Mary has downloaded a bunch of games on her iPad (coloring, dot to dot, etc.) and Josh seems to like to pass time playing those.
Josh did some walking today for the first time in about a week. With assistance, he walked around the circle in the neuro ICU. This was good for him to do, but instead of picking up his left foot when he walks, he drags it. He walked better nearly a month ago when we were at OHSU, which illustrates the ground we have lost.
Josh laughed at something that Mary said today. This is good because he doesn't typically show a lot of emotion, either good or bad. He'll smile on occasion, but a laugh is rare. Mary looked at him and said, "What are you laughing at?" Josh looked back at her and said, "What are YOU laughing at?" This was surprising and amusing for both of us. It's fun to get those infrequent glimpses of our son - to see he's still in there.
One piece of good news is that it appears that the blood clot in Josh's shoulder has dissipated. The doctors did an ultrasound to check the status and couldn't find it. This eliminates the risk of the clot breaking off and going to Josh's lungs, but it does not eliminate the need for blood-thinning shots to the stomach. He, obviously, hates those.
His head is still very sunken -- about the same as yesterday. But the staff continues to drain the cerebrospinal fluid to prevent swelling. Finally our nurse tonight said, "Doesn't this look like too much fluid has been drained?" Well, we aren't medically trained but we both answered with a resounding yes. She stopped the drainage and said she would check with the doctor before draining more. This part makes both of us nervous. We hate the swelling, but there are also bad consequences associated with draining too much fluid. We will be relieved when the shunt is inserted and his bone flap is replaced, and this all is finally resolved. The surgery is now scheduled for Tuesday "as late as 9:00 pm." The surgeon said he had a very busy day that day, and he would do it "after work."
In case you are interested, this is what healthy cerebrospinal fluid looks like. It goes from his head into this bag. It's basically clear.
Pretty boring day for Josh today. There is not a whole lot for him to do while at Swedish Hospital, but he keeps a pretty good attitude about things. Mary has downloaded a bunch of games on her iPad (coloring, dot to dot, etc.) and Josh seems to like to pass time playing those.
Josh did some walking today for the first time in about a week. With assistance, he walked around the circle in the neuro ICU. This was good for him to do, but instead of picking up his left foot when he walks, he drags it. He walked better nearly a month ago when we were at OHSU, which illustrates the ground we have lost.
Josh laughed at something that Mary said today. This is good because he doesn't typically show a lot of emotion, either good or bad. He'll smile on occasion, but a laugh is rare. Mary looked at him and said, "What are you laughing at?" Josh looked back at her and said, "What are YOU laughing at?" This was surprising and amusing for both of us. It's fun to get those infrequent glimpses of our son - to see he's still in there.
One piece of good news is that it appears that the blood clot in Josh's shoulder has dissipated. The doctors did an ultrasound to check the status and couldn't find it. This eliminates the risk of the clot breaking off and going to Josh's lungs, but it does not eliminate the need for blood-thinning shots to the stomach. He, obviously, hates those.
His head is still very sunken -- about the same as yesterday. But the staff continues to drain the cerebrospinal fluid to prevent swelling. Finally our nurse tonight said, "Doesn't this look like too much fluid has been drained?" Well, we aren't medically trained but we both answered with a resounding yes. She stopped the drainage and said she would check with the doctor before draining more. This part makes both of us nervous. We hate the swelling, but there are also bad consequences associated with draining too much fluid. We will be relieved when the shunt is inserted and his bone flap is replaced, and this all is finally resolved. The surgery is now scheduled for Tuesday "as late as 9:00 pm." The surgeon said he had a very busy day that day, and he would do it "after work."
In case you are interested, this is what healthy cerebrospinal fluid looks like. It goes from his head into this bag. It's basically clear.
I've wondered for many years what cerebral spinal fluid looks like. In the 70's I took classes to become an EMT. They said when you come upon an accident and a victim has cerebral spinal fluid draining from his eyes, ears or nose, the person is dying. In a triage situation, leave him for last. Thank you for your post, Joshua's Daddy. Joshua's Grandma
ReplyDeleteDo you have Marco Polo? It's a video messaging app. Kinda like texting, but with video instead. If you get it, hit us up. We love you and anxiously await every update.
ReplyDeleteHi, Emily. We have FaceTime and Facebook Messenger. Do you have either?
DeleteYes we have Messenger. ❤️
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