Thursday Afternoon - A Josiah Update

Hi Everyone!

Not much in the way of the latest, but here goes ...

Josiah has been hooked up to an EEG for 24 hours to see if the neurologists can 'catch' a seizure. Unfortunately, Josiah didn't have a seizure and so must endure another 24 hours (as I type) to see if they are more successful through the night. So we find ourselves the first time ever praying for a seizure: how weird is that? Basically, the neurologists have never observed or recorded one of Josiah's seizures; it's just that the nurses' description of the event confirms that Josiah does have seizures and so he's on medication that is suppose to prevent/manage them. So we'll pray and see what the night brings us. Oh, and the EEG is pretty invasive: Josiah has wires all over his head leading to a computer/monitor/video camera. He's got a 'fishnet doo-rag' on his head holding everything in place, so it isn't comfortable or convenient. But he's been a real trooper about it all.

In other news, Josiah's pressure-support is being lowered this week with the hope that he can be solely on CPAP by the end of next week. To review, pressure-support and CPAP are two ventilator systems that work hand in hand: CPAP blows air into Josiah's lungs (much like blowing air into a paper bag) but doesn't regulate the breathing for him; pressure-support gives an extra 'push' of air every time Josiah inhales to help keep his airway wide. So far Josiah has handled this weaning process very very well. Josiah hasn't had another attempt yet at the LTV (the portable home ventilator) since his 12-hour stint last week. I think the goal is to get him to down to CPAP and then re-evaluate.

That's really it. Thanks for the on-going prayers and thoughts.
- Andrew, Marie & Josiah