In a lot of ways this week has dragged on, but in a lot of ways I can't believe it is Friday already.
On Wednesday, my last post mentioned attempting to redo the "Ictial" test on Thursday.
Wednesday night I kept Cheyenne up until midnight as instructed. But at midnight she was very ready to go to sleep. This time, I slept in the bed next to her to make sure she was ok and wasn't scared. Fortunately, she slept very well all the way until 6:00am when the nurse came in to wake us.
A little before 7:00 she was sitting up watching Frozen and I was sitting on the chair in the corner checking my emails. All of a sudden she started calling out for Nathan as if he was here or in the next room. When I said "Honey, Nathan's not here" and looked up at her I could tell she was having a small seizure. It was what Kevin and I call a "misfire" but the doctors seem to call it a "mini seizure". It's where she is responsive but isn't really coherent. She will respond to pain stimuli and will speak but it's usually gibberish and when it's not, it is not accurate (like saying my name is Randy or calling for Nathan when she knows he's not here). This only lasted a couple of minutes and then she was back to her normal self. I never thought I would say a seizure was "cute" but as far as seizures can go, I'd say that was the cutest or sweetest I've seen since she was calling out for her big brother.
Even though she can't understand their questions well enough to confirm, the doctors suspect she has what's called an Aura just prior to a seizure. This is something that lets a person know a seizure is about to happen. For some it is seeing a bright light, for some, it's getting dizzy, etc. She doesn't understand well enough to answer their questions appropriately. But if there is an aura and surgery does not turn out to be an option for her, it may make the idea of getting a seizure dog something we consider more seriously. They tell us that the dog can sense the aura and either bark to alert someone nearby or even push a button that would stop the seizure (the button would trigger an electric impulse to the brain).
As I mentioned on Wednesday, they were scheduled to reattempt the Ictial scan yesterday. She had the mini seizure about 7:00. Unfortunately, that was too early and they weren't prepared yet. They came in about 8:50 to start setting up for the test. To set up they have to clean her IV port with a sterile wipe, then flush the IV to ensure it is working properly and then they attach the syringe with the dye to the IV port and tape it down to her arm. They need this done so that they can very quickly inject the dye as soon as a seizure begins.
As they were coming in to prepare, she started freaking out at the idea of them messing with her IV. She is always scared they are going to hurt her or stick her with a needle. As she was in the midst of her freak out, she started having another seizure. This one would have been the perfect one to capture for the test but unfortunately, they hadn't prepped the port yet and it wouldn't have worked if they tried to inject it. So we had to wait.
On Tuesday, we missed the window by 10 minutes! So for this one, I asked them to monitor until 3:00 to give us extra time and they agreed. We sat and waited and played games and waited and watched movies and waited and nothing happened. Around 1:00 we decided to have her take a short nap in hopes that the waking up process would naturally trigger a seizure. We let her sleep for about 45 minutes and then woke her up and waited some more. Once again, nothing happened! At 3:05, we had to call it and the nurse removed the dye and cancelled the scan. And 15 minutes later, Cheyenne had another seizure! Fortunately, it wasn't too bad and only lasted about a minute or two. But to make matters worse, becuase Cheyenne would have had to be sedated if we were able to do the scan, she wasn't allowed to eat or drink anything all day and she asked me many times throughout the day for a drink and a snack and it broke my heart to not be able to give it to her - and then that was all for nothing as it turned out. Oh my gosh, I can't begin to tell you how frustrated I was. I wanted to cry. How is it possible that both days, we missed the time period and on this day missed it by THIS much on BOTH ends of the test. It isn't anyone's fault but man was I ticked.
Shortly after this, the doctors came in and assured me that even though we weren't able to get that one scan, they had a lot of data between the other scans and EEG seizure readings. We are all hopeful they have enough data to make a clear decision regarding next steps.
The remainder of the day and night was uneventful. Cheyenne got visited by her aunt and uncle and slept well last night. She was given once dose of meds last night and another this morning. She ate well at breakfast and the doc has cleared her for discharge.
Please continue to pray as we wait for them to review and analyze all the information. They will call us in a few weeks to set up an appointment to get the results and determine next steps.
On Wednesday, my last post mentioned attempting to redo the "Ictial" test on Thursday.
Wednesday night I kept Cheyenne up until midnight as instructed. But at midnight she was very ready to go to sleep. This time, I slept in the bed next to her to make sure she was ok and wasn't scared. Fortunately, she slept very well all the way until 6:00am when the nurse came in to wake us.
A little before 7:00 she was sitting up watching Frozen and I was sitting on the chair in the corner checking my emails. All of a sudden she started calling out for Nathan as if he was here or in the next room. When I said "Honey, Nathan's not here" and looked up at her I could tell she was having a small seizure. It was what Kevin and I call a "misfire" but the doctors seem to call it a "mini seizure". It's where she is responsive but isn't really coherent. She will respond to pain stimuli and will speak but it's usually gibberish and when it's not, it is not accurate (like saying my name is Randy or calling for Nathan when she knows he's not here). This only lasted a couple of minutes and then she was back to her normal self. I never thought I would say a seizure was "cute" but as far as seizures can go, I'd say that was the cutest or sweetest I've seen since she was calling out for her big brother.
Even though she can't understand their questions well enough to confirm, the doctors suspect she has what's called an Aura just prior to a seizure. This is something that lets a person know a seizure is about to happen. For some it is seeing a bright light, for some, it's getting dizzy, etc. She doesn't understand well enough to answer their questions appropriately. But if there is an aura and surgery does not turn out to be an option for her, it may make the idea of getting a seizure dog something we consider more seriously. They tell us that the dog can sense the aura and either bark to alert someone nearby or even push a button that would stop the seizure (the button would trigger an electric impulse to the brain).
As I mentioned on Wednesday, they were scheduled to reattempt the Ictial scan yesterday. She had the mini seizure about 7:00. Unfortunately, that was too early and they weren't prepared yet. They came in about 8:50 to start setting up for the test. To set up they have to clean her IV port with a sterile wipe, then flush the IV to ensure it is working properly and then they attach the syringe with the dye to the IV port and tape it down to her arm. They need this done so that they can very quickly inject the dye as soon as a seizure begins.
As they were coming in to prepare, she started freaking out at the idea of them messing with her IV. She is always scared they are going to hurt her or stick her with a needle. As she was in the midst of her freak out, she started having another seizure. This one would have been the perfect one to capture for the test but unfortunately, they hadn't prepped the port yet and it wouldn't have worked if they tried to inject it. So we had to wait.
On Tuesday, we missed the window by 10 minutes! So for this one, I asked them to monitor until 3:00 to give us extra time and they agreed. We sat and waited and played games and waited and watched movies and waited and nothing happened. Around 1:00 we decided to have her take a short nap in hopes that the waking up process would naturally trigger a seizure. We let her sleep for about 45 minutes and then woke her up and waited some more. Once again, nothing happened! At 3:05, we had to call it and the nurse removed the dye and cancelled the scan. And 15 minutes later, Cheyenne had another seizure! Fortunately, it wasn't too bad and only lasted about a minute or two. But to make matters worse, becuase Cheyenne would have had to be sedated if we were able to do the scan, she wasn't allowed to eat or drink anything all day and she asked me many times throughout the day for a drink and a snack and it broke my heart to not be able to give it to her - and then that was all for nothing as it turned out. Oh my gosh, I can't begin to tell you how frustrated I was. I wanted to cry. How is it possible that both days, we missed the time period and on this day missed it by THIS much on BOTH ends of the test. It isn't anyone's fault but man was I ticked.
Shortly after this, the doctors came in and assured me that even though we weren't able to get that one scan, they had a lot of data between the other scans and EEG seizure readings. We are all hopeful they have enough data to make a clear decision regarding next steps.
The remainder of the day and night was uneventful. Cheyenne got visited by her aunt and uncle and slept well last night. She was given once dose of meds last night and another this morning. She ate well at breakfast and the doc has cleared her for discharge.
Please continue to pray as we wait for them to review and analyze all the information. They will call us in a few weeks to set up an appointment to get the results and determine next steps.
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