Pretty much the same as yesterday.... in pain, cluster seizures, pretty tired, increased secretions and breathing issues when in full feeds.
Her EEG (brain scan) showed us she is having way to many seizures so it's time for more/different meds. Will take three days to get to her up to her needed dose on the new med (start small and increase each dose/day). Will repeat the EEG next week to see if the new med is doing its job. Also need to test liver function as this med can affect that and she has elevated liver levels already. Starting to feel like we have more time ahead of us here
EEG also showed us her pain episodes are not seizures. They are actually pain. Care Conference meeting on Monday to figure out next steps and tests we may want to try. Trying to make her comfortable as possible and keep tabs on pain. Our gut is intussusception is coming and going and we just cannot catch it on ultrasound.
For this weekend we wait and see, make her comfy, hope meds help decrease seizures, and will test if needed for intussusception suspects.
Praying for a quiet and restful weekend.