Tuesday Night - A Josiah Update

It is still Tuesday right?

So, Josiah is still sedated and will be sedated as long as the doctors decide (that is, at least through the morning). The doctors were able to get a PICC line in Josiah this afternoon (had to wait for space to open in radiology) and he's being ventilated (a respirator is breathing for him) because he is so doped up. So far Josiah has not been switched over to a cuff-trach, mostly for two reasons: his leak past his trach is managable (so far) and there isn't a custom trach available that would fit him (yet).

It is possible that Josiah aspirated over the weekend, which would explain why his lungs are in such bad shape while the rest of his body shows no sign of sickness (all the tests run over the last two days have come back 'negative' or 'normal' - thank God). His lungs are extremely filled with fluid and he has no oxygen reserve.

Josiah's most immediate danger is himself: when he wakes he often coughs (a normal response when your lungs are filled) but because he has no reserve and because his airway is so sore, he immediately goes into a severe dying spells (he hasn't had this bad of spells ever - long brady's and deep prolonged d-sats). To be frank, he has almost died a few times in the last couple of days. It feels like we're back in the NICU days when he was always self-extubating and nearly killing himself. It's a critical time.

The other concern is if this fluid build-up leads to secondary infection (like pneumonia). Much badness. So please pray for Josiah. If this is merely aspiration, it's possible that Josiah can be better by the weekend (as long as he doesn't hurt himself through it all).

Josiah's a strong kid which keeps him going but gets him into a lot of trouble. Case in point: he starts to emerge from a dose of chloral that should last him 4 hours (a normal kid upwards of 6) after only 2 hours. Yah. And we're there holding him arms down trying to get him back to sleep because we can't over dose him (and I tell you it's hard holding those arms down because he wants to move). Praise God for his strength. He's had a long list of sedatives, pain killers, paralyzers, and anesthetics put into his body today - any adult would be knocked out for at least a day with what he's put up with. Daddy's proud of his boy, but wishes he'd just sleep sleep sleep and cough only when the nurses want him to.

Thanks for the prayers. Please consider our boy throughout the night. I know many of you would like to come visit, but because thing are so edgy (not to mention the isolation and limited space that we're working with) the timing isn't great.

Near God. God near. God hear. God here. God please do something extrordinary.
- Andrew, Marie & Josiah