Tuesday Evening - A Josiah Update

(Josiah @ 9PM Friday, March 23rd)
... sleeping isn't glamourous, but it sure is cute!

(Josiah @ 8:30 PM Saturday, March 24th)
... today it's the baggy look, yo ;)

(Marie's new 'do @ 11:30 PM Monday, March 26th)
...snazzy!! It hasn't been this short since Gr. 12!!

My apologies to all your faithful online visitors: Marie and I needed some time to process the contents of our meeting before we are to pass along the useful and latest info to you guys.

I'll try to keep this as brief and as simple as possible. From noon to 2 PM today Marie and I were recipients of a ton of content that pertains to our boy Josiah, his current condition, the worst and best case scenarios, and what our options are for his future.

After our lengthy conference - which including an OT (occupational therapist), RT (respirational therapist), a nurse, a geneticist, a couple NICU doctors, a 'trache' doctor, a social worker, and a few other people that I really have no clue what they do! - we have decided to pursue a 'G tube' immediately for Josiah, followed by a 'trache' in the time that follows. It was pretty clear that irregardless to Josiah's breathing difficulties, he was going to need a 'G tube' for his feeding. A G tube is a tube that is surgically implanted directly to the stomach. It sounds nasty and awful I know, but honestly it's necessary and something that is very reversable down the road and is easy to maintain. Marie through her job in Chilliwack has come in contact with a few children who have G tubes and she is very comfortable with the idea. For long-term feeding challenges, a G tube is much better than a NG tube through the nose because it is less intrusive and - believe it or not - a lot more comfortable and will not hinder Josiah's development as much as a NG tube will.

The decision about the 'trache' was much more difficult to come to, but we aren't really left without any options. Based on the results gathered by the ENT doctors (Ear-Nose-Throat), there is is not anatomological reason for Josiah's inability to breathe, which implies that his respiratory struggles are most likely neurological. There is a very small chance that his minor abnormalities all add up to obstruct his breathing, but in the doctors' point of view this is highly unlikely since there are other indications that Josiah had neurological impairment such as his inability to swallow.

As parents we understood that Josiah may be facing some nuerological challenges, but we never considered that they would be so basic as breathing, swallowing, and feeding. As previously mentioned, because Josiah's potential neurological deficencies, it is very unlikely that he will be able to grow out of his 'trache'.

A 'trache' is scary, unnerving, and shattering for really three reasons: first, there is quite bluntly a 15% risk of Sudden Death (clogging, dislodging, etc). There are some very real dangers inherit to having a trache and the first week is especially critical as the body heals and Josiah adapts. The risk of infection of course is also there, but more than just the realities of serious illness and/or death, there is also the reality that this will limit Josiah's abilities through life. Contact sports, for example, are prohibit. So is swimming. Josiah will still be able to do a lot with a trache, but obviously will be missing out on somethings. Finally, there is the issue of care: Josiah's trache will need to be cleanned and checked every 2 hours. Every 2 hours, day and night, by a trained individual. Josiah will never be able to be alone, but must also be in the presence of someone trained in how to take care of him. And the training isn't easy: it will take about 6-8 weeks for Marie and I to be able to Josiah home and to care for him ourselves.

So as you can see, the 'trache' is scary for its inherit dangers and limitations. Quality of life comes at a cost. The other option, to leave Josiah on a respiratory for months, can be equally as damaging: his development will be delayed, potentially impaired; as he grows and gets bigger, stronger, and moves more it becomes increasingly more dangerous and likely that he will self-extubate more frequently (and run the risk of seriously injuring himself, depriving himself from oxygen for a prolonged periods of time, etc); and finally, infections and respirator-assisted infections such as pneumonia are more likely as well.

That all said, we are crying out for God's mercy. Marie and I hate the thought of a trache, but realize that outside of God's direct intervention this is the only thing we can do for our son. We pray intensely - and beg you to join us - that God will heal Josiah and enable him to breathe on his own, through either allowing to neurologically 'get it' or to physically develop to the point he is capable to breathe on his own.

We expect Josiah to have his G tube surgery as soon as possible, maybe as early as next week. We would like to have his trache surgery lined up for at least a week later so that he can recover from the first surgery. Please pray for our Josiah as we prepare for his G tube surgery, as well as the care that he needs from the nurses: to be honest, he makes the nurses very nervous based on his ability to self-extubate without any notice. Please pray that throughout the nights he was rest deeply and not be moving, arching, and coughing which can cause his tube to extubate.

An example of how our boy Josiah freaks out the nurses: this afternoon Josiah was left sleeping under his canopy (when infants sleep, a cover is placed over the crib to keep it dark and quiet). There wasn't any indication that anything was wrong: Josiah's vitals (heart rate, oxygen levels, and respiratory rate) were all normal and steady. Denise (his nurse today) did her routine peek under the covers and nearly died with what she saw! There was Josiah sleeping soundly at the bottom of his 'nest' with his BREATHING TUBE DISCONNECTED FROM THE MACHINE!!! Josiah was breathing essentially through a straw (with no machine assistance) something thankfully that didn't harm him. With all babies on respiratory assistance an IV bag is left on the respiratory tube to stabalize it and prevent it from moving and tugging at his breathing tube and bridge. Because of the strength of Josiah's motion, he disconnected himself and moved six inches south!!!! AYE YI YI!!!! So yeah, pray for this guy, that he won't hurt himself through his 'excercises', stretching and fussing moments, and that the nurses won't be absolutely paranoid by the end of their shifts!

We know that God made Josiah this way and that he hasn't made a mistake. We know that God has already been using Josiah for his glory and will continue to do, but we plead for a miraculous healing, a healing that is beyond all odds will draw attention to who God is, his power and his reputation. There are doctors and nurses here who need to know Jesus and maybe God wants to use Josiah to bring Himself to their attention.

Thanks for all your love and prayers. We are hanging by it.
- Andrew, Marie & Josiah