Hi, it's Kristen. As I was composing this post for Jill, I noticed it is her 200th post. It seems extra monumental since it falls on Matthew's 18th month birthday.
Words from Jill:
Happy 18 month birthday to our sweet little Matthew!! I cannot believe it. And I never would've expected that we would be spending his half birthday in the hospital.
Today he has had another positive day. They have weaned his versed drip from 1 to 0.6 mg/hr and he is tolerating this fine. He is still having some seizures, but once again they stop on their own and do not 'cluster'. He took a nice nap this afternoon and has been awake otherwise. His big battle has been his cough. He has a lot of secretions, and respiratory therapy is a frequent visitor in our room (so you know, I typed home instead of room at first. Hmmm.) giving him treatments and suctioning him. He is off oxygen except for when he sleeps and they suspect that will get better as the pneumonia goes away.
The plan for the weekend is to continue to wean off of the versed drip (this means we could leave the PICU and go to the epilepsy floor), increase his felbitol to it's final dosage tomorrow or Sunday, and remain stable seizure-wise. The ketogenic diet will start when his pneumonia clears. I told the doctor today that my dream "best outcome" would be to end up on the ketogenic diet and only 1 other seizure medication to control his seizures. He said that we will work toward that goal, but that it will be a slow process. Right now, they are just trying to get us home! And I agree with that short term goal!! 25 days is too long (and i expect we will hit the 1 month mark before we leave here) for a person to be in the hospital.