BIG Scare

Today after I picked Oliver up from preschool I had a very frightening episode with him. He fell asleep on the car ride home which isn't that unusual. What was unusual is that when I got him out of his car seat he was limp and had no response to me. Usually, if he falls asleep in the car, his head pops up, if only briefly, when you get him out of the seat. I tried to rouse him a bit, while in my arms, to see if he was awake enough to eat lunch. With the diet he really needs to eat something at lunchtime! I couldn't wake him up so I decided to take him upstairs to his bed. When I put him in bed he did not move. It was like putting a wet rag down - he was motionless. I tried to tickle him with his lovey (blanket) and he made the slightest movement towards it. I noticed that his eye lids were half open and his eyes were rolled back in his head. I started remembering what he was like August 1st and began to freak out. I turned on the lights, shook him, shouted his name and to all that he did nothing-didn't respond at all. Now I was in 100% alarm mode. I ran downstairs to get my phone and call Andrew, all the while shouting and shaking Oliver. We decided I needed to take him to the ER since he was still breathing and wasn't blue. (On August 1st this same thing happened except he turned blue after about 20-30 min of this non-responsive stuff). Once I got him back in the car seat I turned the windows all the way down with the freezing air and rain coming in and he still didn't wake. I keep saying his name and grabbing his legs and he wouldn't acknowledge anything. At that point I decided to dart into Medac with him instead of trying to make it all the way to the ER. When I walked in I told the receptionist I needed a dr. RIGHT now. I plopped him on the table in Medac and he finally began to kind of wake up. He came back slowly at first but, then within 1 or 2 minutes the old Oliver was back. It was the strangest thing ever!! I mean he went from pretty much unconscious to wild man. Since that August 1st morning I will always take his "not waking up" very seriously!

So right when we were in Medac, the nurse from Boston called. Thank you Lord! That was providential timing. She wanted us to get blood work done right then to see if that would shed some light on the situation. She was very concerned about the situation and said if anything further happened to go straight to the ER. After consulting with Dr. Theile, the nurse, Jan said Dr. T thought it was probably a seizure but, possibly a severe/longer postictal phase.

The lab results came back and a few levels were low. Not low enough to trigger a seizure or cause great concern. He was slightly dehydrated but his glucose level was good. Oliver is on a prescription electrolyte mix to help with the low levels. Overall that was good news.

The plan now is to keep increasing the meds and go to the ER if things escalate- while we wait it out until we get to Duke on April 7th. (We can't go to Duke until then because Dr. Mikati is out of the country. Major bummer.)

The good news is Oliver has only had 3 spasms today. It is all SO odd. I don't really know what to think. I don't feel "good" about today at all but the lack of spasms is great (He had 8 yesterday!) We are greatly worried about his development as his speaking has significantly dropped off, he is putting everything in his mouth again, he can't seem to sit still and he isn't interested in TV. These are all patterns he was in when we were in crisis mode back in January triggered by all the spasms. It helps to know last time, once the seizures were controlled, he "came back" but, it is still gut wrenching to watch it happen all over again.

Please keep praying for our sweet boy. We are exhausted from the adrenaline surge that comes with thinking your child is in mortal danger. However, we are also grateful that Oliver seems to be ok despite this scare. We're just relieved and thankful to get through another day.