The last few days have been exhausting at best. We are now in 10 day of seizures. Boo! On Sunday, Monday and Tuesday he had over 20 each day. We went to the ER Tuesday for 6 hours and left with no answers or resolutions. The ER was super busy and we could not get the doctors to listen and look at his chart. After 4 of sitting in the room with no medical professionals coming to see us at all. A nurse came in and said they were going to prep him for an IV and a catheter. At this point Chuck insisted on seeing a doctor and asking why.
A new doctor had come on shift and thank God for that! He FINALLY looked at Gabriels notes from his doctor and…honestly I am still so mad about how everything was handled up to this point I can’t type it out without loosing my religion.
yesterday was better, but still not good. He only had 5 or 6 seizures . We got a message from Gabriels doctor that some of the blood tests from Saturday and Monday (yep 2 of them…hospital messed up 1/2 of them on sat so we had to go back on Monday) showed that g was probably out of ketosis (what the diet does, that slows down his brain) at some point and he body just needs to get back in a steady groove of ketosis. they think the strep followed by the antibiotic probably caused this. in the meantime gabriel is very irratible 1/2 the time and will only eat his snacks and pizza. The pizzas are precious, precious because they are time consuming to make and we have amazing friends who help us with them. I can’t be like a normal mommy who feels frustrated that her kid won’t eat what i make because he has to eat. so we are blowing through pizzas like crazy. My only choice is to syringe oil, butter or cream.
Needless to say it has been a tough go, the last several days. we have had A LOT of extra help from my parents and amazing friends offer to help in anyway. I am getting better at knowing what to ask for an accept it. Chucks parents are currently on the road drive up from Texas to be reinforcements. So glad help is on the way. I realized on Tuesday, that the hardest days for me are when he is having lots of seizures and won’t let me comfort him. I spent hours this week hovering over a child who was unstable on his feet but determined to move and play.
I am so, so glad that help is on the way! Praying he can rebound from the lack of ketosis, AND that you can keep him healthy this winter so that you don’t go through this again!
Hey, Amy! Praying for you guys. So sorry for this hard run of things. But so glad you have people to come help you and be reinforcements. Really, really glad about that.