Maria’s been asleep pretty constantly during her hospital stay, mostly of course due to the extra medication. They took her off the new anti-seizure med (which I keep forgetting the name of) so she is now just on a slightly higher dose of her regular meds.
The big fear with a long seizure is the chance of brain damage. The neurologist said the seizure was short enough that it should be fine. It’s only when seizures are 30+ minutes that there is a problem. However Maria now has a new emergency drug. We will still use the clonazepam wafers if she has bursts of short seizures but if she has another long one we get to use diazepam – rectally administered liquid Valium. Yippee.
Since Maria’s been asleep so much they have had to consider how to administer her medicine. Depakene has an IV version but Trileptal does not. We tried giving her the Trileptal orally by dripping it very, very slowly into her mouth when she was kind of awake but that wasn’t practical in the long run. So for the first time in five years (nearly to the day in fact), Maria has an NG tube. It’s just temporary but it’s a disappointing setback.
She has eaten and drank pretty much nothing in this time, again because she’s been sleeping so much. She’s been getting IV fluids and today started getting Pediasure through her (grumble) NG tube.
Since they discontinued the extra medication today they expected her to wake up, but the little imp kept sleeping all day. She woke a little when they took off the EEG leads but didn’t want to eat or drink, play with her toys, and didn’t really care I was there.
The neurologist wants to release her tomorrow (Saturday) and he’ll be on shift them so there won’t be the usual problem of the backup doctors chickening out and keeping her. However if she doesn’t wake up soon and start eating and drinking, they will keep her until she does. They wanted to move her out of the PICU into general pediatrics today but there are no beds available so they are keeping her where she is for now.
Manolis was of course pretty unhappy about the news. However he’s glad he’s not here. He said if he had seen Maria in such a long seizure he would have died. All this hospital stuff plus Maria being so drugged would totally freak him out so it’s just as well he’s in Greece. He knows we are taking care of it.
Keep your fingers crossed and hope Maria comes home tomorrow.