Hospital Irony

Tuesday evening, Dexter was responsive again and not floppy anymore. Yesterday morning, he was starting to get even more active; so much so that they had to sedate him so his movements wouldn't cause irritation and inflammation in his trachea since he's still intubated. It seemed a bit ironic to me that I took him to the hospital because he was too sedated, and then he wakes up and they sedate him.

Yesterday they said that his hematicrit is low, meaning he doesn't have enough red blood cells. Why? Because they've taken so much blood to run every test that the pediatricians, endocrinologist, metabolic doctors, and neurologist have ordered. Today Dexter's resident doctor informed us he was to the point of needing a transfusion. So you have to give him blood because you took his blood? It's hard not to think that he'd be better off at home in his bassinet!

This morning Dexter was having seizures increasingly frequently. The neurology team came by and Dexter was very cooperative--he showed them exactly what he'd been doing, and they confirmed that he's having seizures. I was telling the doctor about how the onset of his seizures last week was correlated with increased sleepiness, and he was telling me the irony of seizures. Seizures can make a kid tired, so it's good to give them medication to let the brain rest. But seizure meds also make a kid tired. Alas.

And in case any of you are wondering what's actually wrong with Dexter, so are we and a lot of really smart specialists. It still seems to be all questions and no answers beyond "his brain didn't form quite right and doesn't function quite right."