What's going on

I had a pit in my stomach feeling when I got home tonight. Something just isn't right with Logan. Nothing acute, it feels like the occasional decline in function or loss of skills. Logan has had a really tough time with seizures. They just aren't under control and seem to be worse. With all the med changes it is hard to decipher what is worrisome versus a medication side effect. 

Logan has had a slow heart rate intermittently while sleeping at night. This isn't a big deal as he does not drop his rate low enough to need intervention. What is worrisome is that he does it and drops his oxygen saturation. His nurses do everything they can to get his sats up without oxygen but end up needing it as stimulation and position changes do nothing. He is virtually unresponsive. I have tried my mean nurse tricks to try and get him to wake up with little success. 

I have listened to nurse after nurse voice their concerns and uneasiness with his status. We have a new seizure medication change but that does not relieve the teams worries. I have a call out to palliative care and they want to see Logan.

I hope to hear that he is being overmedicated, but am scared that that is not the case. I pray that we are not seeing a decline in function. I worry that his brain degeneration will at some point mess with his ability to perform daily protective functions. He has already lost the ability to protect his airway thus the trach. I don't want him to lose the drive to deep breathe and oxygenate.

I am a nurse so you would think I know what the next steps in our journey entail but I don't. I have no idea what to expect next. I go off of my gut instinct as a mother and wait to see if his testing and or doctors opinions validate this. It is rare that I completely miss the mark. I hope my mommy warrior gut is wrong right now. He has been doing so well at school and has been so healthy. I pray right now is just a side effect of med changes and seizures and nothing else.

Logan is such a warrior and amazing human being. He never seems phased by the changes. His mom on the other hand is a little worried! Thank you to those who continue to pray and support! It means so much especially during those times of worry and helplessness.