The past few weeks

I’m new to the blogging world so bear with me. First I want to say that I am going to fill everyone in on Colbey Raye’s story soon! I’m will start from the beginning and bring everyone up to speed, but for now I’m just going start by roughly explaining the past few weeks. On September 27th Colbey Raye had her first seizure in 3 weeks. They came full force and were very hard. I administers diazepam (a rectal rescue medication) that Friday morning and the rest of the morning went smoothly. Colbey Raye slept it of and then that afternoon the seizures returned. A few mild seizures during the afternoon and a few in the evening. We kept a close eye on her but when Another long hard seizure hit we had to give a second dose of the diazepam. After talking to the on call neurologist we were sent to the ER. From the local ER we would go to Seattle children’s and spend the weekend trying to control her seizures. She had caught the rhino virus and the cold lowered her seizure threshold causing this episode of seizures. Her medication doses were raised and we were sent home. Her cold turned into an ear infection, she had an allergic reaction to amoxicillin ( the antibiotic she was on for the ear infection), and she was still seizing occasional, but not daily. Dr. Ko (Colbey Raye’s neurologist) adjusted her zonisamide and Keppra again in hopes that the adjustment would help keep the seizures away even if a virus was present. Things remained the same with her seizures coming here and there. Colbey Raye was put on a different antibiotic to help clear up the ear infection and on the 15th we headed to Seattle for a Clinic visit with Dr. Ko. During the visit Colbey Raye began to have a cluster of seizures, each became longer than the last and finally we were forced to administer the diazepam. When the diazepam failed to stop the seizure Colbey Raye was picked up by one of the assisting doctors and she ran with Colbey Raye down to the ER. We were admitted and would spend the next week in the hospital adjusting medications, administering rescue meds, loading doses etc… And the seizures kept coming, at 20, 30, 40+ seizures a day. We are all at a bit of a loss. We could blame the lingering virus? Maybe the medications were becoming less effective? We weren’t sure, but the seizures were persistent. We decided to go home in hopes that the dose adjustments would kick in in a few days. She is maxed out on phenobarbital, Keppra, and Zonisamide for her weight. Still the seizures remained and gradually they have started becoming harder and longer each day. Okay now that I’ve brought everything up to speed a little bit I can go into the events of today.

It’s Halloween! And the girls were all dressed up this morning ready for the big day. Austyn Jayne (our 2 Year old) has been talking about trick-or- treating all week long! She put on her “butter why” costume and paraded around the house. Colbey Raye was in her skeleton pjs and was quite sleepy. She had a bad night full of seizures, and I was expecting today to be a little bit on the rough side. At 9 Colbey Raye was ready for her morning nap, rubbing her eyes and searching for her thumb! So I put her in her bed. She had 3 seizures back to back and fell asleep. A lot of the time her seizures happen when she is transitioning from being awake to sleeping. About 2 minutes later a 4th seizure started and went on for a few minutes. At the 3.5 minute mark I got out the diazepam and when the seizure hit 5 minutes I administered the rescue. The seizure slowly stopped and Colbey Raye went to sleep! I called to report the use of the diazepam and after explaining the events of the last few days our team of neurologists thought it would be best to bring Colbey Raye into the hospital. So we are here and I am thankful we are! She has had multiple seizures since we have been here and each one has caused desat. Her lips begging to turn purple and she tries so hard to catch a breath, but nothing. Luckily her seizures are only lasting 1 to 2 minutes and we are here incase she needs a rescue. Now we are both tired from the long day, Colbey Raye is asleep and Soon I hope to be too. Prayers for a restful night! Tomorrow we begging a 24 hour EEG.


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