Hello All—
I was so afraid to come to the hospital this morning. Kari’s condition was so bad last night and I could hear her screams in my head as I walked over from the apartments that I dreaded stepping on to her floor. When I walked in, though, I found her alert as they were getting her up into her wheelchair for the day. Kari’s mom, who is spending nights with her, said she finally went to sleep around 6:30 for a few hours and then ate breakfast. Brea, her tech (check out the “meet the Craig Hospital staff” link on the website) wrote down Kari’s quote of the day that she said when she woke up: “I remember everything I forget.” Kari said that she remembers being crazy last night, although not all the details. She explained some of the things she was trying to say to us, but just couldn’t put into words—amazing because to us she had no Idea what was going on.
After the worst night ever, we probably had the best day ever. Kari got up in her chair around 10:30 and stayed up for 9 hours, a new record for her. She had a good PT and OT session, ate a full lunch, and then we went to see Randy Snow, the first Paralympian inducted into the Olympic Hall of Fame, speak in the gym at Craig. Kari was still really groggy, but enjoyed hearing him and seeing a very successful businessman, athlete and speaker who is paralyzed. (Although he’s not a quad.) After that we went outside where they had refreshments and sat by the small pond near the back patio. We went back inside around 3:00, but Kari was still feeling good, so we got permission from the nurse to go off campus. It was the first time we’d been off the hospital grounds without the whole crew of nurses and techs that they take on the outings. We went up to the top of the parking garage across the street, where there is a great view of the mountains and lots of room for Kari to practice driving. Without anything to be afraid of running into, Kari drove pretty fast and got some more confidence in her chair. I got some video clips of it too, which we’ll try to put on the website soon. After hanging out in the sun up there, we drove over to Swedish hospital to visit some of Kari’s old nurses from the Critical Care Unit where she was from July 17th – 29th. The only one of her nurses that was there was Melissa, so I showed her her old room and the waiting area where our families lives basically stopped for two weeks. I showed her the couch on which we took naps and th corner where we stashed all our food and stuff. As I took her past some of the rooms, she was wowed at the amount of tubes and machines hooked up to the patients, and I explained to her that she used to look like that. It’s been a road much harder than I could have imagined, but we’ve come a long way.
We went back through the tunnel to Craig, got dinner in the downstairs cafeteria and brought it back to our room. She kept forgetting to chew her food because she was so drugged up, but she ate a ton. Afterwards, we went to get some more food at a going away party for a patient on the east side, and Kari saw a baby there with whom she was completely enthralled. Now that Kari’s on so much medication, she basically says whatever she wants, and she was making faces and gestures to the baby for about 5 minutes. In fact, the whole day, she kept spacing out, but she wasn’t panicking, so the medication seems to be slowing down her mind a bit, which is what we were hoping for. After a full day, she had her shower and went to bed. After not having spasms or needing pain medication all day, she started again when she laid down, but after about an hour of it, she went to sleep until about 2 am. (I went back to my room to get something, fell asleep and then woke up a little bit ago, which is why I’m doing this post in the middle of the night.) Since 2am, Kari has been waking up every 5-10 minutes or so and having spasms, but not as violent as last night. If last night hadn’t happened, I’d probably be pretty worried right now because she’s very confused and is talking nonsense again. I know, however, that she’ll come out of it, but it still hurts to see her like this. Hopefully she’ll get in another long period of sleep before morning and we can finally get her on a day night sleep schedule. Thanks for keeping up with us. I saw a ton of comments and got a few phone calls today and I know that a lot of prayers were offered up for Kari today. Seeing how well she did restores my faith a lot—I was getting so discouraged. Thank you for contending for her and for me.
Saturday, October 08, 2005
Thursday, October 06, 2005
Update 10/6
Hello All—
Well, this is the worst night yet. After having a good morning, Kari ate lunch with us and I took my dad back to the airport. When I got back to the hospital around 2:30 Kari was sleeping. She had done so well with her PT in bed this morning and was totally normal mentally so we were planning on getting her up in her chair for a while. She had much less pain and spasms too. Around 3:00 Kari needed to be turned, so I woke her up (we try to wake her up first so we don’t startle her) to see if she wanted to stay in bed or get up and drive around like we were planning. She was totally incoherent—even more so than before. Usually she at least can somewhat listen to what people are saying and eventually can follow a few instructions, but this time she didn’t even know who she was. She screamed and thrashed around in her bed for about an hour, spasming so violently that she kept hitting herself in the face. Finally, she went to sleep and slept soundly until 7:15. When she woke up she wasn’t any better. For the last four hours, she has been screaming complete nonsense, repeating the last words she heard over and over again, constantly yelling obscenities (which if you know Kari, you know it’s the first time I’ve heard her talk like that) and trying to bite her hand when it flies up to her mouth. It is so frustrating and it gets scary when she wants to shake her head violently back and forth. We know that if she would try to relax and do the kind of breathing that my dad had worked with her that the spasms would decrease, but she is not able to make sense of anything that we say. She just holds her breath for a few seconds and then lets out a loud scream and thrashes around. This is the worst and most “gone” she’s been-even worse that the first night this all started. Her whole body just trembles, and even when she doses off for a minute or two, her face is all contorted like she’s crying out in pain.
I feel like I should add a closing paragraph here where I try to make sense of this all, but to tell you the truth, I don’t think there’s really anything else to write. I just can’t tell you how much I hate this. At this point, I don’t really even care if Kari ever walks or uses her hands again; I just want my wife back and for her not to be in pain. It makes me so angry and frustrated that Kari won’t listen to me or her mother (who’s here with me now), and I can’t figure out why she would want to hurt herself. It’s like I’m watching her stab herself with a knife and she refuses to stop. We’re trying just letting her go right now because nothing that we say or do has any effect on her. She refuses to even drink any water and just bites on the straw. Pray for me too. I’d choose just about anything else in the world than to watch Kari go through this.
Aaron.
Well, this is the worst night yet. After having a good morning, Kari ate lunch with us and I took my dad back to the airport. When I got back to the hospital around 2:30 Kari was sleeping. She had done so well with her PT in bed this morning and was totally normal mentally so we were planning on getting her up in her chair for a while. She had much less pain and spasms too. Around 3:00 Kari needed to be turned, so I woke her up (we try to wake her up first so we don’t startle her) to see if she wanted to stay in bed or get up and drive around like we were planning. She was totally incoherent—even more so than before. Usually she at least can somewhat listen to what people are saying and eventually can follow a few instructions, but this time she didn’t even know who she was. She screamed and thrashed around in her bed for about an hour, spasming so violently that she kept hitting herself in the face. Finally, she went to sleep and slept soundly until 7:15. When she woke up she wasn’t any better. For the last four hours, she has been screaming complete nonsense, repeating the last words she heard over and over again, constantly yelling obscenities (which if you know Kari, you know it’s the first time I’ve heard her talk like that) and trying to bite her hand when it flies up to her mouth. It is so frustrating and it gets scary when she wants to shake her head violently back and forth. We know that if she would try to relax and do the kind of breathing that my dad had worked with her that the spasms would decrease, but she is not able to make sense of anything that we say. She just holds her breath for a few seconds and then lets out a loud scream and thrashes around. This is the worst and most “gone” she’s been-even worse that the first night this all started. Her whole body just trembles, and even when she doses off for a minute or two, her face is all contorted like she’s crying out in pain.
I feel like I should add a closing paragraph here where I try to make sense of this all, but to tell you the truth, I don’t think there’s really anything else to write. I just can’t tell you how much I hate this. At this point, I don’t really even care if Kari ever walks or uses her hands again; I just want my wife back and for her not to be in pain. It makes me so angry and frustrated that Kari won’t listen to me or her mother (who’s here with me now), and I can’t figure out why she would want to hurt herself. It’s like I’m watching her stab herself with a knife and she refuses to stop. We’re trying just letting her go right now because nothing that we say or do has any effect on her. She refuses to even drink any water and just bites on the straw. Pray for me too. I’d choose just about anything else in the world than to watch Kari go through this.
Aaron.
Wednesday, October 05, 2005
Update 10/5
Hello All—
Some more ups and downs the last few days. Monday and Tuesday were basically good days. Kari got up and went around in her wheelchair to therapy and to eat, which was more than we were expecting after the weekend. She was coherent and able to speak most of the time and only mixed up her words when she got really tired. The big problem is that she did not sleep very much the last 7 days. She got as little as none, and as much as 3-4 hours a night broken up into hour or hour and a half intervals. She is so exhausted that she can’t stay awake, but so wired from all the medication and full of anxiety and worrying that she cannot sleep. Yesterday, she tried to drive her wheelchair back into the room and she messed up and rammed into the door. With the breath control wheelchairs, they keep moving until you give them the stop command, so the chair’s front wheels lifted up into the air as it kept pushing into the door. When I put the chair in reverse, it slammed down onto the ground and Kari’s head (not in the collar at the time) bounced forward and back pretty hard. We don’t think she hurt herself at all, but it gave her a pretty good scare, and they took x-rays this afternoon to make sure there was no damage done. This morning, though we had another scare. When I walked in, Kari had just woken up and she did not recognize me again. I can’t tell you how scary that is. I was leaning over her bed trying to talk to her and she turned to her mom and said “I don’t know who that man is, but he sure is handsome.” I showed her pictures of her and I and she asked me who the girl in the picture was and said that the boy looked like me. After getting out the mirror, and talking with her for about a half hour, she eventually came to and was normal again.
She has still been having a great deal of pain from all the spasms. I’m not sure if they are getting any better, but her muscle tightness seems a bit less. Even though she slept through it, she was able to move around in therapy a little on Monday and Tuesday. Today she was doing a bit worse and we had to cancel her appointment with the technology clinic and other therapists. Based on the fact that she still can’t go to sleep, even with the heavy doses of pain medication and muscle relaxers, the doctors have decided to try a new drug, Risperdal. Kari mind hasn’t really allowed her to sleep because she can’t stop thinking about things. She will be almost asleep and then will pop her eyes open and start talking about some random thing that pops into her head. Risperdal works by blocking chemicals in the brain that help us think fast. The hope is that will allow her to get some good sleep and break the cycle of pain, anxiety, panic, and restlessness. They expect her to come out of it by next week. Anyways, Kari has been asleep the last 4 hours, but she is awake now because she had to be turned. Hopefully, she’ll go back to sleep for the rest of the night. Anyways, I’m going to go to bed. I can’t wait to come home.
Shalom.
Aaron.
Some more ups and downs the last few days. Monday and Tuesday were basically good days. Kari got up and went around in her wheelchair to therapy and to eat, which was more than we were expecting after the weekend. She was coherent and able to speak most of the time and only mixed up her words when she got really tired. The big problem is that she did not sleep very much the last 7 days. She got as little as none, and as much as 3-4 hours a night broken up into hour or hour and a half intervals. She is so exhausted that she can’t stay awake, but so wired from all the medication and full of anxiety and worrying that she cannot sleep. Yesterday, she tried to drive her wheelchair back into the room and she messed up and rammed into the door. With the breath control wheelchairs, they keep moving until you give them the stop command, so the chair’s front wheels lifted up into the air as it kept pushing into the door. When I put the chair in reverse, it slammed down onto the ground and Kari’s head (not in the collar at the time) bounced forward and back pretty hard. We don’t think she hurt herself at all, but it gave her a pretty good scare, and they took x-rays this afternoon to make sure there was no damage done. This morning, though we had another scare. When I walked in, Kari had just woken up and she did not recognize me again. I can’t tell you how scary that is. I was leaning over her bed trying to talk to her and she turned to her mom and said “I don’t know who that man is, but he sure is handsome.” I showed her pictures of her and I and she asked me who the girl in the picture was and said that the boy looked like me. After getting out the mirror, and talking with her for about a half hour, she eventually came to and was normal again.
She has still been having a great deal of pain from all the spasms. I’m not sure if they are getting any better, but her muscle tightness seems a bit less. Even though she slept through it, she was able to move around in therapy a little on Monday and Tuesday. Today she was doing a bit worse and we had to cancel her appointment with the technology clinic and other therapists. Based on the fact that she still can’t go to sleep, even with the heavy doses of pain medication and muscle relaxers, the doctors have decided to try a new drug, Risperdal. Kari mind hasn’t really allowed her to sleep because she can’t stop thinking about things. She will be almost asleep and then will pop her eyes open and start talking about some random thing that pops into her head. Risperdal works by blocking chemicals in the brain that help us think fast. The hope is that will allow her to get some good sleep and break the cycle of pain, anxiety, panic, and restlessness. They expect her to come out of it by next week. Anyways, Kari has been asleep the last 4 hours, but she is awake now because she had to be turned. Hopefully, she’ll go back to sleep for the rest of the night. Anyways, I’m going to go to bed. I can’t wait to come home.
Shalom.
Aaron.
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