More Hard Decisions

The Seizure Expert Neurologist wants to keep Dexter here another night for his safety, just in case he has trouble breathing at night. I really just want him to come home, but I don't want to ignore the man who actually has experience with this syndrome. And for further safety at home, the PICU attending threw out the option of having an oxygen saturation monitor at home, so that we can bring the hospital dings home with us. Am I a bad mom to not want that? I did sleep here at the hospital last night, and every time the monitor dinged, my eyes popped open and if the nurse wasn't by Dexter's bedside yet, I hopped up and when he was desatting into the 60's and 70's, I pinched his little toes to remind him to breathe. I was happy to do that for him. But sometimes it dinged because he had moved his foot and disrupted the reading, and Dexter was actually satting at 100 and doing great. I think the dinging might make me crazy. But am I jeopardizing Dexter's safety for my personal preferences? I had felt so at peace with taking him off the ventilator and leaving his life in the Lord's hands. But now we have to decide what that looks like. Does that mean keeping him home and loving him and not intervening at all to prolong his life? I think some medical intervention seems reasonable, but how much? Non-FDA medicines that you have to get from Canada? Not holding and playing with my baby because stimulation increases seizure activity? Weekly EEG's? A high-fat, high-protein, no-carb diet instead of breastmilk? Brain surgery? Does improving the quality of life for our family really decrease Dexter's chances of developing to where he can enjoy quality of life? Last week's attending neurologist may not have been able to pin a diagnosis, but he sure was a lot more practical about fitting Dexter into family life.