So as you probably gathered from my last post, today was quite a milestone day in moving from "critical care patient" to "regular neuro patient." Removing the EVD and allowing nutrition by mouth makes a huge difference in the hourly patient protocol.
Jon is still in the ICU side, but only because they haven't finalized logistics of the move. So I went home for an hour to sort through bills in preparation for going to the bank tomorrow morning, leaving Jon snoozing away and snoring up a storm. When I came back to the hospital, he was wide awake and greeted me with an enthusiastic "Hi!" I asked how he was, and he said "I'm good, how are you?"
Because he was so alert, and the hospital had arranged a tray of "clear diet," I asked him if he wanted to eat something. He said okay. So I set up the tray, and uncovered the soup (looked like it was pumpkin) and handed him the soup spoon. The distance between the soup bowl sitting on the tray, and his mouth, might as well have been a mile long. It was too much to navigate successfully on his own. But James, the speech therapist, had let me know that it's preferable to have the patient feed herself/himself, because they will eat more when unassisted. So resist the urge to feed them directly.
I put the bowl in his left hand, so he could bring the bowl closer to his face, and thereby narrowing the distance from bowl to mouth. Perfect! The mountain came to Mohammed. He started eating, slowly and surely.
Now everyone knows it's uncomfortable to be watched eating, especially if the other person isn't eating too, so I asked Jon if I could turn on the TV, and we watched a little Conan while he finished eating. So I chatted, and he ate.
Me: "Oh I like that Chuck Todd, I think he's great. I think he's on MSNBC now."
Jon: "Is that who that is?"
Me: "Yup. I follow him on Twitter too."
[Toyota truck commercial comes on, featuring a foot-activated lift gate.]
Me: "I definitely want one of those in my next car."
Jon: Grunts disapprovingly.
Me: What? It's handy. Especially when you're carrying stuff.
[Mind you, he seems really, really engaged in watching TV. Not mindlessly. Like something is whirring cognitively. Like he's trying to make sense of it. Who comes on Conan as the musical guest? The Zombies, singing "Time of the Season," and Jon is fascinated. This would be music from his youth. Conan ends, so I switch over to The Voice, since music has been pretty effective in stimulating his responses.]
I spot a photo on the side table that I propped up for the nurses to reference--it's a family photo that my work friends thoughtfully printed out and brought over to the hospital. It's on top of a plastic case, and I bring over both.
Me: Hey Jon, did you see this picture?
Jon: Oh my God. (This is what he always says when he sees photos of himself, because he thinks he looks fat. Don't we all? OK maybe not Taylor Swift.)
Me: What? It's a good photo. Except Corey's eyes are kinda closed.
Jon: Yes Min.
[He continues gripping the photo and the plastic holder, but I can tell it's getting heavy.]
Me: Do you want me to put that back?
Jon: No.
Me: Do you just want the photo, or the plastic thing too?
Jon: Just the photo.
[I put the plastic holder back but give him the photo.At the point this is the longest continuous period of conversation he's had so far, so I try going a little further.
Me: Jon, tomorrow I'm going to the bank to figure out our accounts. Is my name on all the right accounts?
Jon: Looks annoyed. What? (As in, why are you asking about this right now?)
Me: Nevermind, it's okay, I'll find out tomorrow.
[More singing on The Voice, then an intercom announcement says visiting hours are over.]
Me: Jon, I have to go now.
Jon: What, already? That's it?
Me: I'll be back tomorrow in the afternoon--they're gonna kick me out of here, and you're supposed to go to sleep.
Jon: OK
Me: I love you.
Jon: I love you too.
So by now my head is spinning, because I'm not quite sure what happened. You are there, you were there all night, and I swear to God is this is the extent of how much you get better I really don't care. I'll take it with happiness. The phrases and responses were 100% you, even if they were a bit of a word salad. I'll just make dressing.
Love,
Min
Jon is still in the ICU side, but only because they haven't finalized logistics of the move. So I went home for an hour to sort through bills in preparation for going to the bank tomorrow morning, leaving Jon snoozing away and snoring up a storm. When I came back to the hospital, he was wide awake and greeted me with an enthusiastic "Hi!" I asked how he was, and he said "I'm good, how are you?"
Because he was so alert, and the hospital had arranged a tray of "clear diet," I asked him if he wanted to eat something. He said okay. So I set up the tray, and uncovered the soup (looked like it was pumpkin) and handed him the soup spoon. The distance between the soup bowl sitting on the tray, and his mouth, might as well have been a mile long. It was too much to navigate successfully on his own. But James, the speech therapist, had let me know that it's preferable to have the patient feed herself/himself, because they will eat more when unassisted. So resist the urge to feed them directly.
I put the bowl in his left hand, so he could bring the bowl closer to his face, and thereby narrowing the distance from bowl to mouth. Perfect! The mountain came to Mohammed. He started eating, slowly and surely.
Now everyone knows it's uncomfortable to be watched eating, especially if the other person isn't eating too, so I asked Jon if I could turn on the TV, and we watched a little Conan while he finished eating. So I chatted, and he ate.
Me: "Oh I like that Chuck Todd, I think he's great. I think he's on MSNBC now."
Jon: "Is that who that is?"
Me: "Yup. I follow him on Twitter too."
[Toyota truck commercial comes on, featuring a foot-activated lift gate.]
Me: "I definitely want one of those in my next car."
Jon: Grunts disapprovingly.
Me: What? It's handy. Especially when you're carrying stuff.
[Mind you, he seems really, really engaged in watching TV. Not mindlessly. Like something is whirring cognitively. Like he's trying to make sense of it. Who comes on Conan as the musical guest? The Zombies, singing "Time of the Season," and Jon is fascinated. This would be music from his youth. Conan ends, so I switch over to The Voice, since music has been pretty effective in stimulating his responses.]
I spot a photo on the side table that I propped up for the nurses to reference--it's a family photo that my work friends thoughtfully printed out and brought over to the hospital. It's on top of a plastic case, and I bring over both.
Me: Hey Jon, did you see this picture?
Jon: Oh my God. (This is what he always says when he sees photos of himself, because he thinks he looks fat. Don't we all? OK maybe not Taylor Swift.)
Me: What? It's a good photo. Except Corey's eyes are kinda closed.
Jon: Yes Min.
[He continues gripping the photo and the plastic holder, but I can tell it's getting heavy.]
Me: Do you want me to put that back?
Jon: No.
Me: Do you just want the photo, or the plastic thing too?
Jon: Just the photo.
[I put the plastic holder back but give him the photo.At the point this is the longest continuous period of conversation he's had so far, so I try going a little further.
Me: Jon, tomorrow I'm going to the bank to figure out our accounts. Is my name on all the right accounts?
Jon: Looks annoyed. What? (As in, why are you asking about this right now?)
Me: Nevermind, it's okay, I'll find out tomorrow.
[More singing on The Voice, then an intercom announcement says visiting hours are over.]
Me: Jon, I have to go now.
Jon: What, already? That's it?
Me: I'll be back tomorrow in the afternoon--they're gonna kick me out of here, and you're supposed to go to sleep.
Jon: OK
Me: I love you.
Jon: I love you too.
So by now my head is spinning, because I'm not quite sure what happened. You are there, you were there all night, and I swear to God is this is the extent of how much you get better I really don't care. I'll take it with happiness. The phrases and responses were 100% you, even if they were a bit of a word salad. I'll just make dressing.
Love,
Min
Really appreciate these updates. This must be so hard for you yet so generous to share these moments. Please tell Jon we love him. And take care of yourself too.
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