Have you ever stopped to think about the significance of small timeframes...like five minutes? In most cases, five minutes is not a huge deal. If you show up someplace five minutes late, it's usually pretty forgivable. If someone is five minutes early to your house gathering, it's usually an aceptable surprize. But in the land of seizures, specifically Cheyenne seizures, five minutes is a HUGE deal. Five minutes is the critical point for when a "rescue med" must be given to stop the seizure.
When we are with Cheyenne at home, we have to always have a Diastat injection available. Diastat is Cheyenne's rescue medication. We have one at home, one at day care, one at school and I carry one in my purse whereever we go with Cheyenne. It's very similar to an Epipen for allergic reactions with one big difference - it has to be administered rectally. Yep, it's a suppository! Honestly, at first I was horrified at the idea of explaining it to the daycare staff and school teachers, but fortunately this is a common practice and noone was surprised or mortified - except me. :) Fortunately, we have never had to admisiter a rescue med and fortunately, here in the hospital, any rescue medication needed is given through her IV.
Cheyenne has what are called "absence" seizures. To an outsider, you wouldn't even know she was having one. In fact, you would probably think she was just being disobdient. She stares off, even if you make eye contact with her you can tell she isn't really making contact with you. She doesn't respond to questions, or if she does it's through gibberish words, and she doesn't respond to any type of pain stimuli (like slapping her hand or pinching her forearm). And fun fact - some nine year old kids stare off to otter space for no reason! So when we notice something, we have a standard procedure where we call her name, then blow on her face, then slap her hand (doctor's orders). When she doesn't respond to any of those, it is a seizure. She has been on meds since we discovered this in July of last year, so those are the only behaviors we have experienced. That's why we believe they were not discovered in China. It's also possible she was not experiencing seizures regularly in China because the neurologist told us they often don't start until a child is between the ages of 7-10.
Monday night, I was publishing my last post while we were staying up until midnight. I was instructed to keep her up until midnight and to wake her up at 6:00 in hopes that a seizure would occur on Tuesday. So I'll give you the update from where we left off...
Monday night was a rough, rough night. I got Cheyenne tucked in around 12:15am after she finished her Paw Patrol movie. Then I settled in for what I had hoped would be at least 4 hours of restful sleep. I knew Cheyenne and I were both exhausted because neither one of us slept Sunday night due to nervousness about her stay this week.
The never ending night started about 45 minutes later when Cheyenne woke me up to go potty. She needs someone to take her to 1) ensure she doesn't fall. She is considered a fall risk because of her medications being withdrawn 2) to make sure she doesn't have a seizure and 3) becuase she is literally tethered to a computer in the room. Since she is being monitored by the EEG readings around the clock, her EEGs LEDS are connected to a small box that is connected by a super long wire which is connected to a computer attached to the wall. This long wire is enough to move around the room and bathroom but it is JUST long enough to reach the toilet in the bathroom.
So I took her to the bathroom, and tucked back in bed. Then about an hour later, she needed to go potty again. So the process is repeated...except this time, when I went to get her back in the bed, she started having a seizure. If a seizure occurs we were instructed to push a two button clicker as soon as possible. One button alerts the nurses and the other notes the time and date on the EEG reading for later reference. I pushed the buttons and right away two nurses came hauling ass into her room. By this time, Cheyenne is twitiching the whole right side of her face, which is new. Then her right foot starts to twitch badly (also new). She wasn't responding to anything we were saying or doing and at one point she was so still it was hard to tell if she was even breathing. She went completely stiff with arms and legs fully extended and straight like a board...then she started convulsing (all so new). This was all so scary to watch. At one point the nurse put a pulse/ox on her and her oxygen was down to about 75% so she had to give her oxygen. At one point, Cheyenne seemed as if she was trying to push the oxygen away, but the EEG tech who was standing between our door and the EEG monitoring room shouted that she was still in it. Since a rescue med is to be given after 5 minutes one nurse went running off to get the rescue. The EEG tech kept hovering between our two rooms and shouting the time lapse...by time the nurse got the med and admistered it, the seizure was about six minutes from the time I pushed the button. We found out from the doctor yesterday that the seizure lasted in totality about NINE minutes. So it took about two minutes or so to stop the seizure once the med was given.
Once the rescue med is given, it slows the brain down so much that the child typically sleeps for hours afterwards. The nurse told me I should get some sleep - yeah right! I was scared and coming down off of the adrenaline rush and scared and emotionally exhausted and did I mention scared? I sat in the chair and watched her sleep and cried silent tears for about 15 minutes. Then I sent Kev a text to call me when he wakes up and then I attempted to sleep...for about 20 minutes until Cheyenne woke up and yet again needed to go potty.
I helped her to the potty and back and then she started vomiting. After she vomited, she would try to sleep for about 15 minute, then sit up and seem like she was going to vomit again, but didn't, until about 4:30 when she did vomit again too fast for me to grab the bucket, so she got it all over herself and the bed. The nurses came in to change the bedding while I changed Chey. This went on until close to 5:00am. Then she was finally worn out enough to sleep. So then we both slept until the nurse came in at 6:00 to wake her.
The testing that she was to do yesterday and tomorrow are the same scans. The difference between the two is that one is supposed to be done with dye injected during a seizure just before the scan and the other is supposed to be without a seizure occurring with dye. Then the doctors compare the two scans and the dyed areas to see the different areas that are impacted. Yesterday, the plan was to get the scan WITH the seizure. Around 9:30 the nurse came in to prep her IV with the special dye that has to be injected within 20 seconds of a seizure starting. Then we all just sat and played games and watched TV and waited for a seizure to occur. Her scan was scheduled for no later than 3:30. The dye was to be injected within the 20 seconds of a seizure and had to be injected by 2:30 at the latest because the scan required it either way and it takes time to do its thing before the scan. We waited and waited and 2:30 came without a seizure. The nurse injected the dye and left the room. Then about 20 minutes later, the seizure came...but unfortunately it was too far after the injection to perform the test they wanted to do. Instead they did the scan without the seizure and we will try again tomorrow to get the scan with a seizure. So tonight we are back to staying up late and getting her up early again tomorrow.
Last night we both slept well and today she has been doing well. She has had several seizures but they weren't too bad. She had a "PET" scan this morning. She did great with it.
Overall, she's in good spirits. Keep praying and pray specifically that she has a seizure tomorrow between 10:00am - 2:00pm.
When we are with Cheyenne at home, we have to always have a Diastat injection available. Diastat is Cheyenne's rescue medication. We have one at home, one at day care, one at school and I carry one in my purse whereever we go with Cheyenne. It's very similar to an Epipen for allergic reactions with one big difference - it has to be administered rectally. Yep, it's a suppository! Honestly, at first I was horrified at the idea of explaining it to the daycare staff and school teachers, but fortunately this is a common practice and noone was surprised or mortified - except me. :) Fortunately, we have never had to admisiter a rescue med and fortunately, here in the hospital, any rescue medication needed is given through her IV.
Cheyenne has what are called "absence" seizures. To an outsider, you wouldn't even know she was having one. In fact, you would probably think she was just being disobdient. She stares off, even if you make eye contact with her you can tell she isn't really making contact with you. She doesn't respond to questions, or if she does it's through gibberish words, and she doesn't respond to any type of pain stimuli (like slapping her hand or pinching her forearm). And fun fact - some nine year old kids stare off to otter space for no reason! So when we notice something, we have a standard procedure where we call her name, then blow on her face, then slap her hand (doctor's orders). When she doesn't respond to any of those, it is a seizure. She has been on meds since we discovered this in July of last year, so those are the only behaviors we have experienced. That's why we believe they were not discovered in China. It's also possible she was not experiencing seizures regularly in China because the neurologist told us they often don't start until a child is between the ages of 7-10.
Monday night, I was publishing my last post while we were staying up until midnight. I was instructed to keep her up until midnight and to wake her up at 6:00 in hopes that a seizure would occur on Tuesday. So I'll give you the update from where we left off...
Monday night was a rough, rough night. I got Cheyenne tucked in around 12:15am after she finished her Paw Patrol movie. Then I settled in for what I had hoped would be at least 4 hours of restful sleep. I knew Cheyenne and I were both exhausted because neither one of us slept Sunday night due to nervousness about her stay this week.
The never ending night started about 45 minutes later when Cheyenne woke me up to go potty. She needs someone to take her to 1) ensure she doesn't fall. She is considered a fall risk because of her medications being withdrawn 2) to make sure she doesn't have a seizure and 3) becuase she is literally tethered to a computer in the room. Since she is being monitored by the EEG readings around the clock, her EEGs LEDS are connected to a small box that is connected by a super long wire which is connected to a computer attached to the wall. This long wire is enough to move around the room and bathroom but it is JUST long enough to reach the toilet in the bathroom.
So I took her to the bathroom, and tucked back in bed. Then about an hour later, she needed to go potty again. So the process is repeated...except this time, when I went to get her back in the bed, she started having a seizure. If a seizure occurs we were instructed to push a two button clicker as soon as possible. One button alerts the nurses and the other notes the time and date on the EEG reading for later reference. I pushed the buttons and right away two nurses came hauling ass into her room. By this time, Cheyenne is twitiching the whole right side of her face, which is new. Then her right foot starts to twitch badly (also new). She wasn't responding to anything we were saying or doing and at one point she was so still it was hard to tell if she was even breathing. She went completely stiff with arms and legs fully extended and straight like a board...then she started convulsing (all so new). This was all so scary to watch. At one point the nurse put a pulse/ox on her and her oxygen was down to about 75% so she had to give her oxygen. At one point, Cheyenne seemed as if she was trying to push the oxygen away, but the EEG tech who was standing between our door and the EEG monitoring room shouted that she was still in it. Since a rescue med is to be given after 5 minutes one nurse went running off to get the rescue. The EEG tech kept hovering between our two rooms and shouting the time lapse...by time the nurse got the med and admistered it, the seizure was about six minutes from the time I pushed the button. We found out from the doctor yesterday that the seizure lasted in totality about NINE minutes. So it took about two minutes or so to stop the seizure once the med was given.
Once the rescue med is given, it slows the brain down so much that the child typically sleeps for hours afterwards. The nurse told me I should get some sleep - yeah right! I was scared and coming down off of the adrenaline rush and scared and emotionally exhausted and did I mention scared? I sat in the chair and watched her sleep and cried silent tears for about 15 minutes. Then I sent Kev a text to call me when he wakes up and then I attempted to sleep...for about 20 minutes until Cheyenne woke up and yet again needed to go potty.
I helped her to the potty and back and then she started vomiting. After she vomited, she would try to sleep for about 15 minute, then sit up and seem like she was going to vomit again, but didn't, until about 4:30 when she did vomit again too fast for me to grab the bucket, so she got it all over herself and the bed. The nurses came in to change the bedding while I changed Chey. This went on until close to 5:00am. Then she was finally worn out enough to sleep. So then we both slept until the nurse came in at 6:00 to wake her.
The testing that she was to do yesterday and tomorrow are the same scans. The difference between the two is that one is supposed to be done with dye injected during a seizure just before the scan and the other is supposed to be without a seizure occurring with dye. Then the doctors compare the two scans and the dyed areas to see the different areas that are impacted. Yesterday, the plan was to get the scan WITH the seizure. Around 9:30 the nurse came in to prep her IV with the special dye that has to be injected within 20 seconds of a seizure starting. Then we all just sat and played games and watched TV and waited for a seizure to occur. Her scan was scheduled for no later than 3:30. The dye was to be injected within the 20 seconds of a seizure and had to be injected by 2:30 at the latest because the scan required it either way and it takes time to do its thing before the scan. We waited and waited and 2:30 came without a seizure. The nurse injected the dye and left the room. Then about 20 minutes later, the seizure came...but unfortunately it was too far after the injection to perform the test they wanted to do. Instead they did the scan without the seizure and we will try again tomorrow to get the scan with a seizure. So tonight we are back to staying up late and getting her up early again tomorrow.
Last night we both slept well and today she has been doing well. She has had several seizures but they weren't too bad. She had a "PET" scan this morning. She did great with it.
Overall, she's in good spirits. Keep praying and pray specifically that she has a seizure tomorrow between 10:00am - 2:00pm.
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