Wednesday Evening - A Josiah Update

After a long silence, finally a post in 2008!

It didn't feel as though there was any 'blog-worthy' events going on Josiah's life, a good thing since it's another demonstration of how stable he has become. 'Stable' is a funny word/concept when it's used in conjunction with Josiah: for all his complexities and mysteries, he will never ever be 'stable' (outside of a miracle); nonetheless, Josiah has proven how even keel his life can be over the past two months.

Yesterday Josiah received his new trach! Now, trach changes are the norm for any patient with a tracheotomy, but Josiah was graduating into a larger trach so it's cause for celebration! His new trach is 4.0 mm wide (his previous one was 3.5 mm), and is slightly longer, meaning it goes a little further into his trachea, a good thing since the smaller one was really easy to pop out! A slightly wider airway means Josiah will be able to cope with secretions better, and hopefully has an easier rate of breathing.

For a few hours now Josiah has been breathing on 'room air'. For the past few months Josiah has been no lower than 25-30% oxygen, but here he is just cruising as regular ol' 21% oxygen - very encouraging! Time will tell if he can remain comfortable and adapt to the lowering of oxygen (ie when he's tired, not feeling well, cranky, etc). Tomorrow we also how to get him on an LTV (portable/home ventilator) to see how he responds. It also means taking Josiah off 'pressure-support' and leaving him solely on 'CPAP'. We're hoping that his lungs and airway will be able to cooperate with this change because it would signal a large step towards going home. Depending on how well Josiah adapts to the new vent (and how long it takes), we might be able to take him on outings in the near future.

Josiah continues to be 'puffy' as nothing seems to solve his edema (water retention) issues. There are no more tests to run, and his diuretics are slowly being weaned to see how his body responds (patients often develop a dependency on diuretics, so by slowly weaning the drugs it's possible that Josiah's body might cope in a positive manner). It may very well be that Josiah will need diuretics for the rest of his life, or at least until a cause shows up in his body.

That covers the basics. Thanks for your on-going consideration and prayer.

Grace & Peace
- Andrew, Marie & Josiah