Words from Jill:
So not much new to report. Last night as soon as Matthew woke up, he started having short little seizures, but pretty close together, so the decision was made to "load" Matthew with a quick acting medication to stop the seizures. This did the job, and Matthew slept all night and most of the morning. He was off oxygen all day, but during the evening he required oxygen again. I think he kept the night nurse busy with suctioning him and such, but I was so tired last night, I didn't hear a thing.
Dr. Doescher came through this afternoon, and said that this will not be an easy fix. He is on so much medication, that the doctor is not sure which med to decrease first. He did make a decision to decrease one of them, and we'll see how it goes. I think this is going to take some time. Meanwhile, when Matthew woke up this afternoon, he started having the seizures again, so they loaded him again, and started an IV (#14 in case you'd like to keep track, and IV poke #32...that tally does not include blood draws). The seizures have not stopped yet, so they will have to give him another medication in his IV to try to stop these seizures that works quickly until the non-sedating medications have time to work. The non-sedating meds take longer to kick in, so we have to wait patiently.
I'm afraid that we're hunkering in for a bit of a long stay. I'm willing to be patient though, because I've seen the results we get when we are here. I have much more tolerance. Even though I miss my other kids and my hubby immensely, I know this is what's best for Matthew. And I'm hoping that we'll be home by Thanksgiving. And if we get to go home sooner, I'll count it as a blessing.