It's Kristen here, bringing you...
Words from Jill:
Rolling with the punches
That's how I feel today, like we just need to keep rolling with the punches. I left off yesterday saying that Matthew was just starting to wake up. Shortly after 5 pm we saw the first seizure. It was short. But each seizure that followed continued to get closer together and lasting a bit longer. By 7pm he was back on the versed drip. This seems to knock the seizures out flat, and hasn't been horribly sedating. This kept the seizures at bay for awhile. He was still awake when I left him around midnight to go to sleep. I got a phone call from the nurse around 5 am saying that he was having progressively more seizures since 3 am and they were calling Dr. D. He had them up the versed and give a bolus. That seemed to help, so I was off to sleep again around 5:45. At 6:30, they called again and said he was seizing almost one on top of the other again. ( I have asked the nurses to call me if anything changes, since I am not able to sleep in his room. I sleep better when I know they will call me if anything changes). Dr. D had ordered to give him a load of another medicine and up his versed. When the nurse tried to flush his IV and Matthew pulled his foot back and started crying. His IV"s have not been lasting long, and this one, too, was done for. I asked about a central line instead of just repoking him for another IV (a central line goes right into a deeper big vein, and can be used a lot longer. You can also draw blood off of a central line). They said they would ask the intensivist if he would. The nurse told me that he was one of the best at doing these. He came over immediately and started it. It went in as slick as a whistle. We think that some of the increase in seizures was due to the fact that Matthew's IV probably started going bad early this morning. When I came to see him at 5 am, she said that she thought it was probably not going to last much longer.
We restarted all his meds and it took a couple hours, but he's resting comfortably now. Matthew just needs more time. More time to adjust to the new meds. We are just learning a big lesson in patience.
I so badly want to be home with the kids, and miss them like crazy. I know Matthew is in the right place to get these seizures fixed so, that does help my sadness of missing my other kids a bit. We've talked about Steve and the kids making a big road trip if we are still here next weekend. I've never been away from them this long.
So I'm off to take a nap. I'm gonna try and catch up on a little much needed sleep.