ER visit to overnight observation


Upon arrival at the ER yesterday, around 4, Colbey Raye had another seizure. I never wish her to have seizures but when we are in the ED for seizure frequency it is always nice for the doctors to be able to witness at least one before they start concocting a plan. The ED fellow did witness it and that helped things move more quickly at first. Soon after that seizure doctor Ko ordered a Phenobarbital bolus and I think that helped break the trend for the night. First we got blood draws to check her medication levels and to look at her liver function, then took her to imaging for a CAT scan. They took a nasal swab to look for infection and considered a lumbar puncture but decided against it because she has not had a fever in over 48 hours. The CAT scan came back clean, Colbey Raye did test positive for the rhino (common cold) virus again, and her platelet count is abnormally high. For now they are just keeping an eye on that and thinking it has to do with her having a virus. All of her medication levels came back high, son there really is no room to adjust the doses at this time. Also her liver function test came back fairly normal so that is a plus and gives us more room to play with different types of medications if needed.
Both teams of doctors have slightly different outlooks on the situation at hand. Neurosurgery believes to think it is a combo between the cold and still being post op. They do not seem to overly concerned and feel that this surgery still has high hopes of being as affective as originally thought and this is just part of the healing process. but our neurologist is a bit more skeptical.. Both think the cold has a lot to do with it, but our neurologist is worried the surgery isn’t going to be as effective as we wanted and we might need to look into future options and start the process of looking into a second surgery, and looking at medications to use until a possible second surgery is decided upon. Dr Ko is not satisfied with Colbey Raye having so many seizures due to a cold and wants her to be on enough medications that she can be seizure free even with a mild cold. This has always been a challenge to accomplish with Colbey and I believe that is why Dr. Ko and Dr. Kuratani are suspicious as to the true reasons behind this outbreak.
Getting admitted was a rough round of events last night. We arrived in the ER at 4, and weren’t admitted to a room until 12:45. Also there was a problem with the pharmacies delivery of Colbey Rayes anti epileptics, she didn’t receive them until 1:00am. I was quit frustrated because she takes them at 9pm and it is pretty critical that she receives them fairly close to on time every day. I asked 4 different times when they would be here and no one really knew. Once Colbey Raye got her meds I was hoping she could finally go to sleep, but then we needed to do another blood draw to recheck her platelet count, and IV therapy did not come in until 2:20am. The poor little miss was exhausted and very very unhappy! For some reason they couldn’t draw any blood, so at 3 they had to take her to another room to have someone else try, finally back at 3:30am she was allowed to fall asleep! She has pretty much been sleeping since then, waking up twice to nurse and for her morning medicine. She had another seizure around 10:45am, but that is the first one since the one in the ER last night. She has been very happy though, which is very refreshing :). It does make these stays a lot more pleasant when she is giving all the nurses and doctors countless smiles :). Even with all the seizures and mild cold she is starting to ack more herself! Giggles and smiles all day! She is also using her right hand even better than prior to surgery. This was one of our biggest post op hopes. Because of the seizures she has started to use it less again but once they slow down hopefully she will just continue to improve rapidly! On the down side it does look as though her right sided vision is slightly impaired. Time will tell but it has been more obvious the last few days. One day at a time is a trend around the smith house right now! Seizures bring on a sense of constant worry, whether it is in the back of your brain lingering or weighing in the front, it’s there, always. During periods where Colbey Raye is doing well and haas few days seizure free things begin to go smoothly with nightly routines and the house stays clean and chores done, but with each seizure comes a tornado that spins through the house hitting every room causing chaos, I don’t understand how it happens but it does! It is as if everything freezes during the seizure and once it’s over I turn around and there are a bazillion things to do but now I’m keeping an extra close eye on Colbey Raye and don’t wonder to far our of hearing or sight range, making it hard to accomplish the daily tasks at hand. The baby monitor camera begins to room hop as Colbey Raye does, and the monitor sits next to me. But each task I do takes a little longer when breaking to watch closely at Colbey Rayes facial expressions and arm movements. The road is windy, bumpy and long but it’s a road worth traveling! We love you Colbey Raye and you teach us more and more each day. Stay strong little miss, and you will move mountains! ❤️


2 thoughts on “ER visit to overnight observation

  1. Megan

    Thank you so much for keeping us updated. We love you all and continue to pray that the road becomes a little “less bumpy” in the near future! Hugs!


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