Hi, it's Kristen, posting...
Words from Jill:
Today has been pretty uneventful, really. Matthew had a rough night, with lots of increases in his medications, and lots of extra medications that were 'loaded" to try to stop him from having seizures. They would work for awhile, but his little body would rise above them and he would have more seizures. I only got about 5 hours of sleep last night at best, and Matthew's night was almost without sleep. By morning, his oxygen requirements were increasing and he had a horrible cough. The doctors were concerned he would need to go on the ventilator again. They did a chest x ray, and lab work. It all came back fine, so they are assuming his respiratory drive is depressed due to all of the medications. I was up by 6:30, and by 8 am I knew I needed to go back to sleep. I was very grumpy and could feel it. I think my sleep deprivation hit a high, so I took myself promptly back to bed.
Matthew had an MRI scheduled for 1 pm and so I got a couple hours of restful sleep and then went out to his room to see him. The nurse said he had a very quiet morning and she was able to wean him off the high flow and his lungs sounded much better. They took him down to MRI and it sounds like he did well down there too. He came back to me resting comfortably around 2:30. We had a quiet afternoon, and waited for the neurologist to show up. By 6 he hadn't shown up and I asked to have him paged. Of the three epileptologists, this is the only one I had not met. He called back and said that he was not on campus, and he would not look up the MRI results, but that he would be in in the morning to talk with me. I can tell that this will not be one of our favorite doctors. Dr. D has already offered to come see us everyday we are here, so I am content with that. Matthew has slept most of the evening away, and continues to have few seizures. I think he may have his nights and days mixed up, so we'll see what tonight brings. He tends to give his night nurses a run for their money.
Not much new to update, but sometimes quiet days are good days.