Loving Luke: Seizures Suck!!

While seizures do indeed suck, I'll once again express my gratitude and love for St. Louis Children's Hospital and my new affection for West County EMS. Long, long story, but Sunday night Luke ended up having a seizure that by the time it was all said and done lasted over 1.5 hours and took 4 doses of rescue drugs to stop. Even then he turned around and shortly after started up again requiring two more rescue drugs and eventually a sedative to put him out. Luke was breathing on his own but because his oxygen levels were dropping unless he had help and his blood carbon dioxide levels were increasing because he lacked the strength to expel his breath properly he ended up being intubated for a short time. He was able to maintain his levels the next morning and have the tube removed. To say it was a terrifying night for us is an understatement. What I will say is we are incredibly grateful for the West County EMS department for bringing us to SLCH. It is not the closest to our house so we were relieved that they were more than willing. They also listened to us when we explained Luke's seizures because they are so difficult to identify and gave him more medicine on the way to the hospital. The doctors, nurses and staff at SLCH continue to comfort us during extremely trying times.
We're still at SLCH. He's resting comfortably. He seems tired and irritable but who can blame the poor kid!
The last few weeks have been trying. He had a short run of the stomach flu, followed by seizures, followed by (wait for this one!) shingles (argh!), followed by the seizures from hell. After much testing they also discovered he has some random, uncommon cold virus... Not a terrible virus just another thing on top of it all! Grrrr! Our poor buddy!
We try to focus on our positives so we can keep our heads above water. Our family and friends are amazing, as usual. Ben is hoping that we DON'T get out today because grandma's is soooooo much better! I've had lots of prayers and support from work and an amazing friend helping make sure my classroom is ready. Dan's work continues to be understanding as neither of us feel comfortable leaving Luke for very long. Lots of love and support has been pouring in from friends and family. We truly don't need anything except for prayers and your kind words. It helps a lot.
Dan is amazing in these situations. I am both relieved and impressed with the way he can keep his cool and use great judgement when I feel like I'm a panicking mess!!!
At this point, Luke and Dan are taking a little well deserved mid morning snooze. We're waiting for the neuros to do their rounds so we know what the next step is. They are planning to do an eeg today and then we'll see. We're not entirely comfortable with his level of stability-he's walking around like he's had one too many adult beverages! But we also understand the last few days have kicked his butt! He's tiring easily... Also understandable. So we'll see. This was a great deal scarier than last year (I didn't think it could get worse!!!) so we're in no real hurry to get out of here!
Thanks for all the love and support. The kind words and prayers mean the world to us.