5/27/15 - Seizures?? Seriously??

I got a call at work today from Leo's day nurse concerned that Leo wasn't himself and might be having seizures. I'm thinking to myself, this nurse always seems to find ways to create drama but I hurried home to check things out to make sure. Kate's out of town this week visiting her brother with her Mom, Dad, and Sammie so I have full-time Leo responsibilities. After getting home, Leo seemed fine, maybe a little tired but awake and interactive. After a call to Leo's neurologist, I decided the best was to wait and see if Leo does anything else of concern that would require an immediate visit to the ER and in the mean time, I would just get follow-up appointments made.


After working from home all day and checking in on Leo from time to time, nothing was really out of the ordinary. Then I decided to give Leo a bath and do his trach ties before she left for the day since trach ties require two people. Again, Leo was awake and alert but as I was getting him dressed, he started doing the things that the day nurse described to me. All the sudden he would go limp, keep his eyes open, but not react to anything with shallow breaths. However, this time it was worse and started to impact his breathing stats. Knowing how these situations turn extremely quickly, I wasn't waiting any longer and me and the nurse threw all of Leo's equipment in the van and got to Peoria as fast as we could.


Once we arrived at the ER, he started to show physical signs of a seizure. Never is his 18 months has he ever had a seizure so now the question is why? Scary stuff that I never want to see again. After a CT that showed nothing acute and blood workup, still no answer why. An EEG (monitor brain waves) also shown signs of seizure activity so they started him on anti-seizure mediation. So far it has helped, well, according to the EEG. He has been passed out asleep for the past several hours so hard to tell if he will wake and be his normal self. Still more testing to figure out why but for the time being he is stable and doing well - according to the stats that display on the machines....