PET and MRI scheduled

Let’s recap a little. Yesterday morning Colbey Raye got a VEEG, it went on for about 3 hours, in the first hour we caught 7 seizures where she was desating into the 50s, and then Colbey was given a phenobarbitol bolus and that seemed to stop the cluster of seizures and help keep the seizures at bay for the rest of the EEG. She had a few more seizure later last night. She’s been extra extra sleepy since the phenobarb bolus and was just starting to return to a more normal base line this after noon. She had only had 3 seizures today until now. Colbey Raye has had 5 seizures in the last 38 minutes, she is desating to low 80s and is only holding her breath for little short amounts of time (this is good new compared to yesterday’s cluster). It’s been about 31 hours since her last pheno bolus so it’s most likely just wearing off now and that’s why the seizures have begun to get harder and clustered again.

As for the rest of the happenings here at the hospital, Colbey Raye is receiving a PET scan and an MRI in the morning! This is what we have been waiting so patiently for! These tests are the first step to Colbey Raye’s surgery work up. There have also been orders put in for a functioning MRI to take place but that has yet to be scheduled. On Monday our neurologist, the epileptologist and Neurosurgeons will be holding a big meeting about what they feel is the best option surgically, or not, for Colbey Raye. There have been many discussions over the last 2 days on which rout would best fit Colbey’s needs, and talk about medication changes and diets have been in the mix. As for now the Keppra is being dropped and the Trileptol and Zonisamide are being bumped up. Colbey Raye’s maintenance dose of phenobarbitol will be raised soon too but hasn’t been yet. She will be put on a fairly high dose of phenobarbitol so our neurologist wants to do it soon while in the hospital so they can monitor her reaction. She will most likely be more sleepy during the days because of it but as long as it’s helping control the seizures it’s worth trying. If this plan of action is not effective there are other medications being considered, each having their own side affects that can cause permanent or serious damage so we are hoping they will not need to be used. Colbey Raye’s liver function is not quite what it should be, It’s not bad or dangerous yet but the doctors will be keeping a close eye on it. It could be a long night tonight, Colbey cannot nurse at all after 11:30pm and won’t be able to nurse again until after her tests are done and she’s awake. I am thankful she takes a binki during times like this! She will be getting IV fluids so she stays hydrated.

While I’m here Josh is continuing to work and Austyn Jayne is house hoping! She had a clingy day yesterday and a little mopy but today she gets to spend the night with her favorite little cousin Cooper and is so so excited! She didn’t even want to talk to me on the phone she was so excited to head to their house. A huge thank you to the Nelson’s for watching her tonight and tomorrow, I think it will really help her forget about mommy being gone :). I’ve got 2 super sweet tough girls on my hands! hopefully they won’t turn this toughness around on me in their teenage years šŸ˜œ. They have both been through so much, and I know how hard it is being the one at home while the sisters gone in the hospital. I’m glad she is young during all of this but it is still hard on her. Just want to hold that great big girl and kiss her! Even though shed probably push me away and say “no nuggles mom!” Haha. Gosh I love her. This journey has been the toughest on Josh. He can’t stand seeing his little monkey in the hospital and seizing all the time. Plus we have had the worst luck with cars the last few weeks it’s stressed him out a lot. It’s hard having to be gone in the hospital, but I’m okay with it, it’s manageable for me and I can do it. Josh has a much harder time accepting these things, and I don’t blame him, it is hard. But something we need to do. We all need the prayers, but right now Josh and miss Coco-be especially.


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