Friday Morning - A Josiah Update

Hi Everyone

Josiah continues to have a pretty good week. He's been teething a bit we think so he hasn't been too happy about that, and he's still adjusting to his seizure meds so he sometimes sleeping a lot. Josiah still has the odd seizure and his temperature fluctuates a lot which makes him quite lethargic if it goes high. All in all, it's been a "same old, same old" kind of week, though he did spend some time on his stomach with the PT and tried some crawling (Josiah pushed himself forward a few inches!)

Twice in the last week and a bit Josiah's trach has 'popped out' during trach ties. It's no one's fault - we're waiting for a longer trach for a reason! This last one (this morning) was scarier because it took a few attempts to get it back in (Josiah's trachea was clenched too tightly for the trach to be placed back in). But he's sedated and safe now. Of course it's really hard to hear/see because it is a potential life/death moment and even though Josiah's comfortable and safe after the fact, you always have that gnawing wonder if he sustained any brain damage after these moments (Josiah's sats obviously drop low when he doesn't have his trach in!)

So, keep on praying for the daily stuff (safety, seizures, fevers, and spells). We pray that Josiah's tracheal malaysia (floppy narrow airway) and epiglottis will be healed, that he won't have seizures and fevers any more (or that they will be managed), and that Josiah will be safe and won't sustain permanent damage from all his crazy activity. Thanks :)

Grace & Peace.
- Andrew, Marie & Josiah