Yesterday turned wild pretty fast, which tends to be the case when something is going on medically with Max. Wednesday night he had four seizures. They were about two hours apart, and he slept a good chunk of the morning...waking up at 11:00am.
When he ate and had his medicine, he was still groggy, but starting to wake up. But about an hour later he had a seizure and threw up all of his food and medicine. And then they started coming every hour, on the hour, with now real back to normal in between.
I called his neurologist and we gave him more medicine, and then had to wait one more hour to see if it was going to work. In that time, i scurried around packing our hospital bag, and calling people...including Steve who was at the airport flying home...to let them know it was likely we were headed up to Children's soon.
My friend, Susan, came over to help me to the hospital by driving the Monster Mobile as l sat in the back seat by Max, holding his head up. Of course we had to deal with 5:00 traffic, but when we got to the ER, all of his doctors had already called in and the intake nurse took us straight back to a room.
The nurse asked when his last seizure was and asked what they looked like...and then Max showed him. That got the ball rolling. We went from one nurse in the room, to 6 doctors and nurses. I usually have Steve there with me filling the doctors in while they work on Max, so i was a little frazzled doing both of our jobs. ;).
It was quickly decided to give him Ativan to stop the seizures. He was out smooth within a minute. In all that frenzy, they took his blood to run his metabolic levels and started him on IV fluids because he was throwing up after each seizure. Once he was resting, i could sit down and wait for Steve to arrive.
Steve got to the ER just as they were finishing hooking him up to an EEG. The doctors were watching his EEG from home, and were waiting to see what was going on with him. He hasn't been sick, didn't have fever, and had a pretty great week...so this ring of seizures was pretty out o the blue.
While Steve was at home letting little doggie out, and gathering his clothes, the resident doctor came in and told us the neurology team found he was in status epilepticus. This is a state of constant seizure, even though he wasn't convulsing, and not news to me. It's why we were admitted last October...and the last time before that.
What he said next broke me down and gave that poor resident his bawling mom moment of the night. They said they were going to have to put us in the PICU for the night for observation...and I guess I have a lot more anxiety about being in there than I remembered, because all i could think was, this is way worse than they are telling me if they want us in the PICU.
The last two times we were in the PICU, he was very very sick...so it just freaked me out that they wanted him in there. I wanted to talk to the neurologist on call just to see what their thinking was, since we hadn't talked to anyone since before coming to the hospital.
She was good to explain that the Ativan slows his breathing to such a pace that they needed to watch him closely which can not happen as well on the floor.
Luckily, we were able to avoid the PICU because the status broke. Max's primary neurologist called to let us know that he was watching his EEG at home as well as the doctor on call, and we talked for a while on the plan going ahead.
We finally got into a room at 1:00am, and got to go to sleep around 2:30. Thanks to Heather, I was reminded to ask for a cot...and got a pretty decent sleep in for a few hours. The sun woke me up around 5:30, and I got up to shower before sly the doctors started coming in. As much as I dislike waking up early, I dislike even more trying to put my best face forward and talk to doctors with bed head and in my PJ's.
For now, just filling in all of the new doctors and nurses...teaching them about Max, and waiting to see our neurologist to see what the plan is for today. My guess is we're here another night. And won't start eating until tonight or tomorrow. He'll have to be awake, and eating by his tummy again before they will get us out of here.