Updated: @ midnight
I think I will post everything for one day on one post and just update on the top as the day progresses.
Not much new, other than we are in a room in the step-down ICU. He is still having these "twitching" episodes that last 1-2 minutes that we are unsure if they are seizures, but no long seizures. During these "twitching episodes" he will cry for painful stimuli (read: pinching) but doesn't move his eyes or respond any other way to you. During the longer episodes, he is not responsive to pain. So who knows what is really going on. They have him on a whole slew of medications right now. The attending doctor told us that the amount of medication they had given to Matthew to stop his seizures would have put any other kid his age on a ventilator. That's scary to me. But Matthew is a fighter, and he didn't even fall asleep, much less forget how to breathe :). He was even flirting with his nurse after she gave him all that medication. He was giving her smiles and "talking" to her.
I will say again, as I have said in the past when he has issues with seizures; that neurology care here in our great state is sub-par. The neurologist has YET to come see us, but has given orders by phone. No orders for an EEG though, which to me is ultimately frustrating. That would be the first thing I would do. But EEG's are not easy to come by in this hospital, and they must be scheduled and done between the hours of 9 and 4. That is probably my greatest irritation. This is the same doctor that,yesterday, when we were in our local ER for a grand mal seizure that lasted 5 minutes (a seizure type that Matthew has never had) said to just do labs, give one dose of ativan and send him home. Someday's, I honestly wonder if they care. Today(prior to the ER admission), we had an appointment with the neurosurgeon (he was the doctor that put in Matthew's shunt). I kept the appointment because I wanted him to look at Matthew and see what he thought. I told him what was going on, and he was irate. He said that in no uncertain terms we should take Matthew to Omaha, so that the ER doctors in Omaha would make them come see him. He said that if they tried to send him home without an admission, that I was to call him and he would make sure that Matthew was admitted. He said that sometimes you have to make lazy doctors do their job and this was the way to trump them.
Yes, he actually called these doctors LAZY...frustrating.
I sure wish that Matthew's epileptologists were closer. I would head there in a heart beat. My pediatrician called them for me this morning, because she too, was frustrated with our lack of care, and his epileptologist called her back within 15 minutes. Last time I spoke to her (our pediatrician) she had been trying to get ahold of our local neurologists for over 2 hours to relay the message of what she wanted done for Matthew. I don't know what the answer to the problem is, other than we live in the wrong place to get good neurology care.
I'm off to bed, I'm beat. Update more when I can
I don't have much time to update right now, but do want to let you know Matthew is in the hospital now, still in the ER and unstable, having seizures. He has had 6 seizures in the ER so far, 2 of them longer than 10 minutes. They are not his typical seizures and they have loaded him with 3 different types of seizure medications., and they seem to only be termporarily helping him. His shunt is fine and he is not sick with any illness. I will update again when we get settled in a room, which will probably NOT be soon.