I am so happy to report that the seizure monster has not returned and he has been seizure free for over 24 hours now! He was a very sleepy boy yesterday while his brain and body recovered. The doctors said that since it was a fox’s seizure, there is less likely damage to the brain. He is up and awake right now after a good nights sleep. So far I haven’t noticed any changes. He’s still our happy active little guy, thank the Lord!
Everett has been on seizure medications for years. His EEGs have always been abnormal putting at risk for seizures. In the past, there have two events related to dialysis and we knew what caused them. Even though we knew he was high risk, we always just sort of thought that it was something he was going to catch a break on. Our previous neurologist had ordered an emergency med incase he ever needed it. We thought we would ever need it. We sort of took pleasure is being able to say “nope” when asked if we had to use it. At least now we can say, “yes and…”. Yes and I panicked a little but yes and I learned from it. Yes and I feel more prepared for next time. Yes and I feel more prepared for being around the children I work with. Yes and Everett is still our happy boy. Yes and we survived.
New plan going forward—know our seizure plan like the back of our hand (yes we did every thing right, we saw what it was, we moved him to the floor, we got him to his side, we called 911 when it wasn’t stopping but it doesn’t hurt to be even more prepared for next time). We will have an increased dose for his emergency medicine. We will probably not only continue to see our neurologist with the CP clinic but add on an epileptologist to our wonderful group of providers. We also pray that whatever caused this particular seizure never comes back again and we can return to saying “no” when asked if we have needed our emergency meds.
Thank you to everyone for all the prayers and support given. Sometimes I second guess putting our experiences on here. I originally started this page to spread awareness for amnioinfusions and to help other families going through similar experiences as it was a caring bridge journal that helped us. This page became so much more than that. Not only is it a place for me to gather thoughts and journal our experiences but it brought us a community that has held us up over these last five years. We are so incredibly thankful for the support you all have shown to our little warrior and to our family.
Now we return to our everyday life with a new experience under our belt. We move forward and learn from this and put a few more tools in our belt. I’m the words of big brother Declan “Everett you’re not sick anymore, get out of the hospital and come on home!
