It is 7:45p. All the boys are asleep. It has been a long day. I am afraid I am sounding like a broken record.
Will had a rough night of sleep last night. He has never been a good sleeper. Heck, I wouldn't even ever classify him as a fair sleeper. Will just does not sleep well. But over the past several nights, he has gone from waking 3 times per night to waking 8 times per night. This is not only tiring for Will, but for me, Nate, and Luke - who shares a room with his twin. Thankfully, Luke has learned to sleep through most of Will's nightly noises. But this morning, I could tell by the circles under his eyes that things were starting to wear on him too.
Will is typically the last one up in the morning. Luke usually walks into our bathroom around 5:45a. Matt is ready to rise around 6:15a. I usually go in to give Will his morning medicine around 6:30a, and wake him up about 15 minutes later.
Things went almost typically this morning, except we were all yawning a lot. I hadn't finished my first cup of coffee yet when I went to wake Will up. But he was already awake. Eyes and neck fixed painfully to the left.
Thankfully I had been in the room less than 5 minutes beforehand, giving Will his medicine. He was not having a seizure then, so I know he had not been seizing long. But Will's seizures usually happen at night time, in the 30 minutes after he goes to bed. To have one in the morning upon waking is really very strange. New. I don't like new.
Without thinking, I grabbed Nate, got Will's intranasal Versed, started Luke getting dressed and got Matt a waffle. The brothers were none the wiser about what was going on.
We administered the Versed. Will started to gag. He vomited a little. Not a lot. But just enough that I wasn't sure he kept the medicine down. I pulled out the rectal Diastat, our second line of defense. Thankfully it works quickly - typically in 8 minutes.
Will was out to the world. We checked him for subclinical seizures (he had none). Nate took Luke and Matt to school and I waited it out with Will. It takes hours for him to rouse after a seizure, and the emergency medications. I got in contact with the neurologist.
He slept noisily. He finished up a 14 day course of antibiotics for a sinus infection on Thanksgiving. He was doing pretty good. But here we are, 4 days later, with a nose full of thick green goo. I was hesitant to give him a decongestant, given the meds in his system. I called the ENT.
Oma took over duty around lunch time. Will had come to, but was very low tone. He drank milk and ate, thankfully, and seemed back to himself. I heard back from the doctors.
The ENT could see Will this afternoon for a nasal swab. Yum. Unfortunately it takes 3 days for the culture to grow and the ENT doesn't want to prescribe any more of the "wrong" antibiotics to Will. So we have the go ahead to give him Mucinex until they know exactly what bug he's harboring in his sinuses.
The neurologist indicated that we will likely increase Will's Lamactil dosage again. We have an appointment on Wednesday to go over the plan, and to see if there is any way that Will's shunt is playing a part in this ever increasing seizure drama. Seriously. We have gone from 1 seizure per month to 3 seizures in less than a month. It is too much. We have to figure out what is causing them and do a better job controlling them.
So Will is back asleep, happy for the relief that the Mucinex brought him tonight. He's had a day full of drugs. I wish it wasn't this way. I wish we could do more, figure out the unknown, and make it all better... more manageable. I am not asking for a miracle. I'm just asking for relief for this boy.